Bioethics_Beyond_Altruism_Donating_and_Transforming_Human_Biological

Bioethics_Beyond_Altruism_Donating_and_Transforming_Human_Biological_Materials

editor rhonda m. shaw victoria university of wellington wellington, new zealand isbn 978-3-319-55531-7 doi 10.1007/978-3-319-55532-4 isbn 978-3-319-55532-4 (ebook) library of congress control number: 2017937276 © the editor(s) (if applicable) and the author(s) 2017 this work is subject to copyright. all rights are solely and exclusively licensed by the publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. the use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. the publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. the publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. cover illustration: © mevans/getty images printed on acid-free paper this palgrave macmillan imprint is published by springer nature the registered company is springer international publishing ag the registered company address is: gewerbestrasse 11, 6330 cham, switzerland

acknowledgements i am grateful to all the authors of this volume for their original con- tributions and commitment to this project. i also wish to acknowledge the scholars who generously acted as peer reviewers for the chapters in this volume. your insights and constructive feedback have been invalu- able. thanks are due to carol bartle (te puawaitanga ki otautahi trust, new zealand), linda bennett (university of melbourne, australia), sharyn graham davies (auckland university of technology, new zealand), gill haddow (university of edinburgh, scotland), tonya kara (auckland city hospital, new zealand), laura machin (lancaster university, england), dominique martin (deakin university, australia), meredith nash (university of tasmania, australia), amrita pande (university of cape town, south africa), beatriz reyes-foster (university of central florida, usa), maria olejaz tellerup (university of copenhagen, denmark), and kristin zeiler (linköping university, sweden). finally, special thanks to ursula robinson-shaw for her copy editing assistance, and to victoria university of wellington for funding to help complete the final editing stages of the collection. v www.ebook3000.com

contents part i introduction 1 bioethics beyond altruism rhonda m. shaw part ii stem cells 2 dead human bodies and embryos: commonalities and disparities in ethical debate d. gareth jones 3 35 3 the immortal life of ethics? the alienation of body tissue, ethics and the informed consent procedure within induced pluripotent stem cell research casimir macgregor, tristan mccaughey, megan munsie, alice pébay and alex hewitt 61 vii

viii contents 4 on the everyday ethics of stem cell therapies in india nayantara sheoran appleton and aditya bharadwaj part iii assisted human reproduction 5 towards an understanding of embryo donation in new zealand: the views of donors and recipients sonja goedeke and ken daniels 6 7 ethics for embryologists ruth p. fitzgerald and michael legge beyond altruism: a case for compensated surrogate motherhood ruth walker and liezl van zyl part iv organ donation and transplantation 8 keeping it in the family: debating the bio-intimacy of uterine transplants and commercial surrogacy charlotte kroløkke and michael nebeling petersen 9 gift-of-life? the psychosocial experiences of heart, liver and kidney recipients geraldine o’brien 10 organ donation practices and end-of-life care: unusual bedfellows or comfortable companions? maureen coombs and martin woods 11 valued matter: anthropological insights on the (bio)political economy of organ exchange ciara kierans 89 115 141 165 189 215 239 265 www.ebook3000.com

contents ix part v breastmilk exchange 12 towards social maternity: where’s the mother? stories from a transgender dad as a case study of human milk sharing fiona giles 13 bio-intimate economies of breastmilk exchange: peer-milk sharing and donor breastmilk in the nicu rhonda m. shaw and maggie morgan index 291 319 343

editor and contributors about the editor rhonda m. shaw is associate professor in sociology at victoria university of wellington, new zealand. her research interests include the sociology of morality and ethics, and empirical research on assisted human reproduction, breastmilk sharing, and organ and tissue exchange. contributors nayantara sheoran appleton victoria university of wellington, wellington, new zealand aditya bharadwaj graduate institute development studies, geneva, switzerland maureen coombs victoria university of wellington, wellington, new zealand ken daniels university of canterbury, christchurch, new zealand ruth p. fitzgerald university of otago, dunedin, new zealand international of and xi www.ebook3000.com

xii editor and contributors fiona giles university of sydney, sydney, australia sonja goedeke auckland university of technology, auckland, new zealand alex hewitt menzies institute of medical research, university of tasmania, tasmania, australia d. gareth jones university of otago, dunedin, new zealand ciara kierans department of public health and policy, university of liverpool, liverpool, england charlotte kroløkke university of southern denmark, odense, denmark michael legge university of otago, dunedin, new zealand casimir macgregor monash university, melbourne, australia tristan mccaughey monash university, melbourne, australia maggie morgan wellington regional hospital, wellington, new zealand megan munsie university of melbourne, melbourne, australia geraldine o’brien murdoch university, perth, wa, australia michael nebeling petersen university of southern denmark, odense, denmark alice pébay university of melbourne, melbourne, australia rhonda m. shaw victoria university of wellington, wellington, new zealand ruth walker university of waikato, hamilton, new zealand martin woods victoria university of wellington, wellington, new zealand liezl van zyl university of waikato, hamilton, new zealand

1 bioethics beyond altruism rhonda m. shaw introduction the medical use of human biological materials and body parts for thera- peutic, reproductive and research purposes is usually justified in terms of alleviating physical, psychological and social suffering, saving or enhancing life, or advancing biomedical knowledge. recent social sci- ence and cultural studies literature in the field has taken a different tack to mainstream bioethical discussion on this topic, turning to an exami- nation of the disaggregation, transfer, redistribution and exchange of human bodily fluids, cells, tissues and genetic material across borders and boundaries once considered impermeable (see lock and nguyen 2010; lundin et al. 2016; malmqvist and zeiler 2016), and to the capitalisation of biological materials to produce new forms of life (see cooper and waldby 2014; novas 2006; parry 2007; rajan 2006; rose r.m. shaw (*) victoria university of wellington, wellington, new zealand e-mail: rhonda.shaw@vuw.ac.nz © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_1 3

4 r.m. shaw 2001, 2007a, 2007b, 2008; waldby 2000, 2002; waldby and mitchell 2006; waldby and cooper 2008, 2010). these scholars are not only interested in how body parts and bodily fragments move between indi- viduals, families and strangers to produce new subjectivities, identi- ties and biosocial groups; they are interested in the transformation of biological materials as they travel between biobanks, laboratories and cultures and across transnational territories. the essays in this edited volume contribute to this conversation, drawing on original research from many viewpoints to examine the social, cultural, ethical and eco- nomic dimensions of bodily exchange in the areas of fertility, clinical research, health and medicine. in this volume, the term bioethics is read broadly to refer to schol- arship concerning a range of issues relating to biomedical research, technological innovation and health therapy associated with tissue provision, donation and exchange. in keeping with the interdisci- plinary and multidisciplinary spirit of global bioethics, we include chapters in the volume by scholars working in the fields of anatomy, anthropology, biochemistry, cultural and media studies, medicine, nursing and midwifery studies, philosophy, psychology, and sociol- ogy. the volume is thematically organised into four sections: stem cell research, assisted human reproduction, organ donation and transplan- tation, and breastmilk exchange. the chapters in each section exam- ine the framing of bodily exchange through the lens of altruism and gift and commodity relations; bioethical conundrums around the cir- culation of human biological materials and their legal and regulatory limits in the global context; the economic benefits and health values attributed to various body parts and products in the present climate; and the matter of immaterial labour and affective relations that are formed between donors, recipients and other actors involved in tissue exchange processes. in the title of the edited collection‚ we use the notion of human bio- logical materials generically to refer to the separation of bodily fluids, cells, reproductive tissue (e.g. gametes and embryos) and solid organs as objects from the body. this term, which is borrowed from margaret lock and vinh-kim nguyen (2010: 206), is used in much the same way as catherine waldby and robert mitchell (2006: 6) deploy the www.ebook3000.com

1 bioethics beyond altruism 5 term ‘tissue’ in their work, ‘to include blood, organs and any other kind of living matter taken from the body’. unlike other essay collec- tions on bioethics, this volume includes discussion around breastmilk exchange. as i have noted elsewhere, although there is a burgeoning lit- erature on the subject of breastfeeding and breastmilk sharing in femi- nist economics, geography, queer theory, philosophy, psychoanalysis, race relations and sociology, there has been scant reference to breastmilk in bioethical discourse that deals with the donation of human biological materials and tissue economies (shaw 2015; bartlett and shaw 2010). only very recently has the topic of breastmilk exchange drawn on scholarship from feminist theory and science and technology studies (sts) to focus on its circulation as a body product made mobile by new advances in lactation and internet technologies (see boyer 2010; carroll 2014; gribble 2014; ryan et al. 2013; team and ryan 2014), and in relation to the donation and banking of human blood, gametes and organs (see carter and reyes-foster 2016; shaw 2008a, 2012; swanson 2014). in this collection, breastmilk sharing is discussed as an emer- gent mobile tissue economy accompanied by a new form of ‘biological citizenship’ (rose and novas 2005) that cuts across national and geo- graphic boundaries and the nature/culture divide to reconfigure social and cultural norms around gender‚ identity‚ and kinship. bioethics beyond altruism entails discussion of stem cells, reproduc- tive tissues and services, breastmilk sharing, and organs-for-transplant. although these biological materials have been grouped together for this collection, not all these body parts and fragments belong to a homoge- neous population. effluvia, organs and tissues are not accorded equiva- lent symbolic and emotional value by those giving and receiving them. for example, donating excess breastmilk is not routinely regarded as corporeally self-sacrificing in the same way as donating a single kid- ney or donating ovarian eggs. breastmilk is replenishable, and breast- milk expression is less risky and invasive than oöcyte or organ donation. however, it takes more time and effort to give breastmilk than it does to give blood, since it must be hand-expressed and pumped and, in the context of peer-to-peer milk sharing, labelled, stored and often trans- ported by donors themselves.

6 r.m. shaw for anatomists and pathologists, the biological value and clinical sig- nificance of specific organs and body tissues depends on their attribution as vital and essential, or non-vital ‘junk’ or waste material (jones 2002). the classification of various organs as vital, semi- or non-vital‚ and ves- tigial reflects, as nikolas rose (2008: 40) would say, ‘different registers of value’, interlinking biological, economic and ethical concerns. the ranking and ontological status of body parts and fragments is thus inde- terminate and depends on what is done with and to these materials as they transition through various alienable and inalienable states. as arjun appadurai (1986: 17) has argued with respect to the commodity, an object or entity is not necessarily ‘one kind of thing rather than another, but one phase in the life of some things’. an object or thing therefore moves in and out of various states throughout the course of its social life or ‘career’ history. bodily material is not only accorded different social values and meanings as it moves between laboratories, institutions, and across geographical locations and cultural spaces, its vitality can be diverted from its in vivo location‚ transformed into derivatives during the course of travel‚ and redeployed to other bodies‚ spaces and times (waldby and mitchell 2006). these shifts‚ coupled with biomedical and technological innovations in tissue exchange‚ such as the way blood is now processed‚ discarded‚ reformulated‚ or fractionated for use in multi- ple products (busby‚ kent and farrell 2014) have precipitated rethinking around the ethics of tissue donation and its incentivistion. the contributors to this volume all argue, to varying degrees, that the scale and extent to which biological vitality or ‘life itself’ (rose 2001, 2007a) can now be regenerated means that the movement of biologi- cal materials in and out of value-differentiated states is highly complex and constantly in flux. rather than addressing these diverse mobile bod- ily economies at a general level of analysis‚ the authors in this volume contend that donation and transplantation practices are not everywhere the same. as such‚ they call for ethnographic and sociological study of tissue provision and transaction that is attentive to the specificities of socio-political and geographical location, site and context. a point of confluence for the essays in the collection is the examination of ideals around altruism, which underscore public discourses and social policy around body part and tissue donation as gifts, particularly in advanced post-industrial democracies. www.ebook3000.com

1 bioethics beyond altruism 7 altruism and moral economy by the turn of the twenty-first century, public narratives of tissue donation and provision remained largely wedded to the promotion of a moral economy based on altruism as a social good.1 as a term in common usage, altruism refers to behaviour that is motivated by a primary regard for the welfare of others rather than oneself. in sociol- ogy and psychology, altruism is frequently identified as a key element in morality (jeffries et al. 2006; post 2007), yet its nature and varieties differ vastly depending on context (see oakley et al. 2012). since the french sociologist auguste comte first coined the term in his positive philosophy in the nineteenth century, altruism has been contrasted with egoism. its precise meaning varies between disciplines and across dis- courses, but the belief that altruistic behaviours occur as a loss to the self is deeply rooted in western thinking that divides altruism into soft and hard versions (weiss and perez 2014). in the hard version, altruis- tic behaviour is egoless, self-sacrificial and unconditional, whereas ‘soft’ altruism takes reciprocation into account and includes practices such as mutual care, volunteerism and cooperation. in the organ transplanta- tion literature, for example, altruism denotes intentional acts motivated by the absence of external reward, monetary exchange and commerciali- sation (delmonico et al. 2002; epstein and danovitch 2009; ghods 2004). soft versions of altruism may permit donor compensation beyond direct expenses, as is the case for women in the uk ‘newcastle egg sharing for research scheme’ (nesr), who ‘share’ their ovarian eggs for research purposes in exchange for discounted fertility treatment (haimes 2016; haimes et al. 2012). in medical sociology and bioethics, the term altruism has been cou- pled with the metaphor of the gift, to describe both unconditional acts and processes of reciprocity and exchange involving the human body (see fox and swazey 1978; murray 1987; novaes 1989; titmuss ([1970] 1997). alan d. schrift (1997) traces the operationalisation of gift terminology in the humanities and social sciences to several sources. in addition to marcel mauss’s ([1950] 1990) anthropology of gift- exchange in archaic societies, schrift identifies jacques derrida’s (1992) thinking on the impossibility of the gift in philosophy‚2 and gendered

8 r.m. shaw economies of moral behaviour deriving from the writing of feminist theorists such as carol gilligan (1982) as influential. one of the most significant applications of gift terminology to think- ing about the transfer of bodily tissue and fragments has been richard titmuss’ ([1970] 1997) comparative research on blood donation in the usa and uk. titmuss expounded the virtues of a gift system for man- aging blood donation that was voluntary and without remuneration, where blood was distributed according to medical need rather than abil- ity to pay. his argument was based on the idea that public models of service provision were superior to market models because they stimu- lated ethical behaviours motivated by altruism and social duty, which was essential for social cohesion and a sense of community. in con- trast, titmuss claimed that commodity systems produced temporary, non-binding relations between vendors and purchasers, and encouraged people to act in instrumental ways that debased and devalued human relationships and undermined the dignity of the human body. since the initial publication of titmuss’ book in 1970, debates about the manage- ment and distribution of blood and other bodily tissues have remained largely polarised around the dichotomy of gift and commodity,3 despite transformations in political economy, the shift to post-fordism and the rise of neoliberal ideology, and biomedical and technological innova- tions in tissue exchange. although the gift-giving model is still the reigning organisational framework for the promotion and provision of tissue donation in many countries across the globe, and is conceptualised in opposition to a market model of exchange based on commodification, transactional behaviours involving human biological materials are highly diverse. people who donate bodily materials and services may have mixed motivations for donation. those motivations, as researchers increas- ingly point out, may include financial and altruistic reasons (pennings 2015). additionally, what altruism is taken to mean in different loca- tions, contexts and times is not absolute. like titmuss, kieran healy (2006) posits a social-organisational account of altruism, arguing that perceptions of altruism depend very much on the extent to which a par- ticular act is institutionalised and the incidence (rate or frequency of occurrence) of that act.4 the meaning of altruism thus tends to shift in www.ebook3000.com

1 bioethics beyond altruism 9 relation to how the exchange of biological materials is framed and how human tissue is provided and procured: as a gift, a donation, as shar- ing, an act of humanity, a gesture of solidarity or political citizenship, as body property, or as a resource and form of biological vitality. biovalue and tissue economies since early 2000 we saw the emergence of a complex, substantive body of social science and cultural studies literature theorising the capitalisa- tion of life and human vitality by contemporary biotechnologies. this literature has given rise to many positions and practices that cluster around numerous ‘bio-concepts’—bioeconomics (rose 2001), biocapi- tal (rajan 2006), biosociality (rabinow 1992), and biovalue (waldby 2000, 2002) (for a critical appraisal of these neologisms‚ see birch 2012; birch and tyfield 2012). these terms and their various permuta- tions signify that the circulation of biological materials – such as the transfer of stem cells‚ genes‚ blood products and reproductive materials in the life science industries – is entangled with capitalism, and is not simply a matter of altruism. scholars working in this field have increas- ingly departed from discussions of tissue provision through the bioethi- cal lens of altruism and informed consent. instead‚ they emphasise the link between gift and commodity systems, principally to the benefit of globalised pharmaceutical institutions and bio-technology companies. for these analysts, the technological innovations and medical advances that facilitate the transfer and transformation of biological materials, via the collection, screening, processing, reformulation, division and distri- bution of bodily fragments and products, make them an increasingly valuable and lucrative area of investment. following michel foucault’s (1984) account of bio-power and bio-politics‚ rose (2001‚ 2007a) and waldby (2000, 2002), whose early work has been instrumental in providing the conceptual framing of this debate around the management and mobilisation of human bodies as a resource‚ argue that bodily fragments and products have potential to create biovalue. in waldby’s (2000) rendering, biovalue refers to ‘a sur- plus value of vitality’, derived from the extraction and regeneration of

10 r.m. shaw marginal forms of life from the body’s biological processes. biovalue is produced by biological materials and bodily labour from patients, who, with or without their consent, provide ‘left over’, ‘reserve’ and ‘waste’ tissue (from foetal, cadaverous or embryonic sources) or participate in clinical trials that transform and redeploy their biological materials into patentable products to ‘enhance the health and vitality of the liv- ing’ (rose 2008: 42; rose and novas 2005: 455). the creation of bio- value from reproductive tissue and other bodily materials is inextricably linked to the development of the life sciences and the production of bio-knowledge in post-fordist neoliberal economies. in their more recent work, waldby and cooper (2008, 2010) and cooper and waldby (2014) discuss biovalue and the creation of bio- knowledge in terms of regenerative and clinical labour. like kean birch (2012), they argue that value creation in the new bioeconomy depends on the extraction of biological materials (e.g. tissue, genes, stem cells), various forms of bodily and reproductive labour (e.g. clinical trial par- ticipation, preparation for oöcyte donation), as well as immaterial labour (e.g. clinical skill, experience and bio-knowledge). the social- psychological motivations of individuals to donate or provide stem cells, oöcytes, embryos, umbilical cord blood or even breastmilk for free and unremunerated therefore end up making money for companies, organ- isations and institutions with a vested interest in their transformation and circulation. from this perspective, the characterisation of tissue donation in simple terms as a gift or act of corporeal generosity over- looks the way that mobile body tissues and fragments enter commodity chains in complex global socio-economic systems. scholarship focusing on the creation of economic wealth from the production of biovalue draws attention to the opacity of the gift/commodity framework for understanding the increasingly routine transfer of human tissue samples across time and space. this is certainly true of freely given breastmilk to for-profit milk banks such as prolacta and medolac in the usa, which transform the therapeutic value of the donated milk into economic value through a variety of processed and repackaged breastmilk derivatives (boyer 2010; hassan 2010); the com- mercialisation of the ‘mo’ cell line, created from the removal of material taken and used without consent from john moore’s cancerous spleen www.ebook3000.com

1 bioethics beyond altruism 11 (dickenson 2008); the immortalisation of the hela cell line, named after henrietta lacks (skloot 2010); the patent granted to the miami children’s hospital and dr matalon for the canavan registry that was co-founded by a patient organisation (novas 2006); and the informal exchange between scientists from different institutions of cryogenically stored samples of brain tissue for research purposes, as discussed by bronwyn parry (2007). likewise, waldby and cooper (2008: 69) docu- ment the solicitation of oöcytes purely for biomedical research by stem cell enterprises in the usa. unlike the nesr scheme erica haimes discusses, the us egg providers are not undergoing fertility treatment, but are still framed as altruistic donors even though they are financially compensated for their eggs. on the flip side, feminist scholars in the social sciences studying assisted reproduction have also challenged altruistic narratives around reproductive gift-giving, arguing that women who donate ovarian eggs or who act as gestational and traditional surrogates do not always have supererogatory reasons for doing so, but see the provision of oöcytes as a form of other-regarding body project (almeling 2009, 2011; shaw 2008b; thompson 2005). charlotte kroløkke (2015, 2016) has investigated the cross-cutting motivations of transborder egg providers, who not only assist others to build families, but travel for free to an exotic holiday destination where the fertility clinic is based, in addition to receiving compensation for their donative efforts. similar to the stem cell treatments discussed in the chapters this volume, assisted repro- duction in the global context is bound up with forms of medical travel that mean the desire and hope for the promise of a child, or health and longevity in the case of stem cell therapy, is intertwined with commerce. following viviana zelizer (1997, 2011), who has argued that people regularly imbue their donative acts with moral intent even where the introduction of market relations is involved, these commentators show how the transactions they document are entangled in social relations of moral and economic value. this research demonstrates the extent to which the circulation of bodily materials does not readily fit either a pure gift or pure market exchange model, but occupies a liminal space or ‘grey zone’ (lundin et al. 2016) between acts of donation and gift, and compensation and market commodification.

12 r.m. shaw affect and bio-intimate economies alongside the literature emphasising the centrality of economic action with biomedical and technological innovation, several scholars have examined the bioeconomy for its facilitation of novel ways of doing eth- ics. for rose (2007a, 2007b, 2008), the economic aspect of ‘vital poli- tics’ or ‘the politics of life itself’, which he relates to the ever-growing commodification of biological materials as profit-generating for the health industry, is supplemented by ‘an ethical framing of the term value’ (birch and tyfield 2012: 304). in his work, rose signals the importance of identifying the intersection between the economic and the ethical as a register of value to understand the nature of contem- porary biopolitics. notably, he posits an ‘elective affinity’ between the spirit of biocapital and ‘our contemporary somatic ethic’, in a manner reminiscent of max weber’s account of ethical action, to suggest that people organise their conduct and practices to realise specific values in response to the dilemmas they face. in rose’s account, individuals are self-managing, active citizens, subject to new forms of responsibility centred on the body (rose and novas 2005). in the process of endeav- ouring to make good their identity, individuals in post-fordist neo- liberal economies choreograph their health, vitality and well-being by prioritising somatic life. it is this focus on the body, and its regulation, that has become the central field of political and cultural action and the defining property of who we are in the contemporary period. while rose, waldby and others (e.g. cooper 2008; rajan 2006; thompson 2005) have theorised the promissory value of reproductive and bodily tissues for the global bioeconomy, the fields of globalisation studies (appadurai 1986, 1996), interactionist sociology (hochschild 1983, 2012; zelizer 1997, 2011) and affect theory (ahmed 2004; berlant 2008; hardt 1999; hardt and negri 2000) offer valuable insights through which to examine the conjunction of somatic eth- ics with human vitality in the context of transplant, fertility and stem cell travel. building on appadurai’s (1996) theory of modern globalisa- tion and his vocabulary around the global cultural economy to describe the movement and flow through different ‘global scapes’ of people www.ebook3000.com

1 bioethics beyond altruism 13 (ethnoscapes), technologies (technoscapes), capital (financescapes), images (mediascapes) and ideas (ideascapes), medical anthropologist marcia inhorn (2011; inhorn and gürtin 2011) proposes the term ‘bioscape’ after aditya bharadwaj (2008), to capture the movement of biological substances and body parts across transnational boundaries. inhorn’s (2015) concern is primarily with ‘reproflows’; that is, the cir- culation of reproductive tissue and services and the phenomenon of fertility travel and cross-border reproductive care (what she calls the ‘reproscape’ ), but the bioscape includes the circulation across geograph- ical borders of all manner of somatic life—organs, tissues, gametes, breastmilk, cell lines, dna sequences, etc.—alongside actors, technolo- gies, money, media and ideas, including values about moral and ethical life. in this ‘global assemblage’ (collier and ong 2005) of intensified bio- flows, circuits of people (consumers, patients, donors, providers, vendors, patient organisations, brokers, distributors, physicians, scientists, bioethi- cists, lawyers, policy makers), objects and technologies, some of whom are connected by narratives of altruism that promote the sharing of vital- ity across local, national and global borders, produce commercial ben- efit for medical and pharmaceutical institutions. these institutions not only create biocapital or biovalue, but also trade in intimacies—the face of immaterial labour that michael hardt (1999: 90) refers to as affec- tive (see hardt and negri 2000). in the context of health, fertility, and biomedical experimentation, the immaterial products of affective labour stretch across a range of emotional responses, from anticipation, hope, and desire, to feelings of gratitude‚ worthiness, and relief. this affec- tive labour reworks the moral boundaries defining the self and others‚ creating virtual or actual relationships‚ and communities and collective subjectivities based around the transfer and exchange of body fluids, tis- sues and organs. the generation of biovalue therefore not only depends on the procurement of biological material and its productive trans- formation; bioeconomies are reliant on the medical and technological know-how of researchers and health professionals, as well as the ‘affec- tive labour of human contact and interaction’ (hardt 1999: 95), which involves the production and manipulation of emotion and intimacy.

14 r.m. shaw while the values of donors and tissue providers are not necessarily aligned with the interests of biocapital, educational and recruitment organi- sations seek to incorporate altruistic ideals into promotional discourse where possible, to encourage donation awareness and engagement and to provide justificatory accounts for individuals who want to donate. as healy (2006: 2) points out, normative scripts promoting non-remunerated bodily gifting, such as blood and organ donation, ‘provide people with reasons and oppor- tunities to give’. indeed, the kind of emotional labour that arlie hochschild (1983) talked about in her ground-breaking sociological study of flight attendants as a condition of employment in late industrial capitalism plays a significant role in the donation and reception of body parts and fragments in the global bioeconomy, offering scripts not only for donors who provide biological materials for use, but also for organisations and institutions with vested interests in promoting tissue exchange. the feeling rules, to use hochschild’s language‚ around donative acts, such as gamete or organ donation, influence and shape the kinds of affective responses permitted by donors, recipients and health pro- fessionals in these institutional contexts (shaw 2008a). as research on ovarian egg donation in the usa (almeling 2011‚ 2009) and spain (kroløkke 2015) shows‚ when affective and reproductive labour is mixed with material labour‚ egg providers’ claims of empathy with infertile individuals and couples effectively distance them from the neg- ative charge of monetary self-interest, while simultaneously providing an effective moral façade for fertility clinics in the business of profiting from gamete donation. although egg providers may enjoy the chance to go on a holiday to a foreign destination in the process of donating oöcytes, this aspect of their journey is downplayed to recipients so as to frame their donation as affective and altruistic. altruistic scripts that promote relational gifting heighten the percep- tion of generosity between individuals, connecting them to one another by their affective alignment with communities of belonging. when gifting takes this form it is not altruistic in the sense of being one-way, unconditional and disinterested, but is based on values of solidarity (pennings 2015; rose and novas 2005). women who donate their sur- plus breastmilk to babies in need, for instance, not only conform to ide- ologies around responsible motherhood by providing their infants with www.ebook3000.com

1 bioethics beyond altruism 15 the best nutritional and immunological start in life (murphy 2000); they extend treasured proto-altruistic affects of care and self-sacrifice into the public domain (berlant 2008). in the process of donating excess or surplus breastmilk for others to consume, peer milk sharers construct networks of bio-intimacy through which they forge relational and caring ties, as well as objectifying their moral identities with friend, family and community groups as generous and kind-hearted. in the bio- and reproscapes referred to by anthropology and sociology scholars, commercial biotechnology firms, companies and wealthy indi- viduals capitalise on the desires of breastmilk, gamete and organ donors to share the generative aspect of their bodies, expropriating their labour and donative gifts by profiting from their good will or financial vulner- ability. from a phenomenological perspective‚ the altruistic donor may make a deliberate choice to provision human biological materials and services as a way of crafting the self and taking responsibility for oth- ers. however, as lawrence cohen (2005) has observed, the movement of body products and biosubstances to different global markets in the bioscape is an uneven and ethically fraught process. due to the eco- nomic position of many tissue providers, cohen maintains that some bodies are more ‘bioavailable’ than others (e.g. see pande’s (2015) dis- cussion of surrogate mothers in india). likewise, monir moniruzzaman (2012) has identified the movement of organs in transnational com- modity chains, that connect people from affluent countries with donors and vendors from low-income countries, as a kind of ‘bioviolence’ that has detrimental implications for unwitting individuals caught up in the illicit organ trade. susanne lundin (2016) points out that this may be why the screening of organ donors who present as blood or affinal rela- tives for transplant recipients in hospitals with reputations for unregu- lated medical tourism is less robust than in jurisdictions where such practices are prohibited. the global oöcyte trade is also highly stratified. across transnational fertility clinics in southern spain, romania and crete, egg vending is more lucrative for eastern european egg provid- ers with phenotypical similarity to their wealthy european recipients (fair skin and colouring) than it is for women from southern europe‚ for whom physical likeness is less evident (waldby and cooper 2008). for these donors and tissue providers, the relinquishment of body products,

16 r.m. shaw fragments and reproductive services does not create affective ties, rela- tions of care‚ or solidarity‚ but magnifies already existing inequalities. for this reason, waldby (2002: 319) contends that complex tissue networks cannot ‘be addressed simply through the reassertion of the categories and morality of a humanist bioethics’—a contention taken seriously by the contributors to this volume. the chapters in this volume the problematic of the gift and sacrifice‚ as well as questions of econ- omy‚ are at the heart of bioethics beyond altruism. in the essays in this collection‚ tissue economies are regarded in some respects as both affec- tive and moral economies‚ involving not only the provision and transac- tion of human biological materials but also the legitimation of desirable social relations‚ emotional ties and attachments. while some authors discuss these economies separately in their respective chapters, they each examine the applicability of altruism as the pre-eminent value under- girding tissue donation and provision in the present period. part i: stem cells in the first section of bioethics beyond altruism, three essays examine the highly experimental sector of the global bio-knowledge economy involving regenerative medicine and stem cell research. from the mid- twentieth century onwards, the development, production and sale of stem cell lines and tissue for medical and research use ushered in a new promissory period of cell therapies and technologies for organ and tis- sue replacement and regeneration, such as the treatment of damaged brain tissue, cardiovascular disease and cell deficiency. the development of stem cell treatments and clinical trials, ardently debated both in the public domain and in academic texts, is tied to discussion about the moral status of the embryo and foetus as social objects and entities. the search for viable sources of human embryonic stem cells (hesc) and adult stem cells raises a host of ethical and political concerns www.ebook3000.com

1 bioethics beyond altruism 17 around the procurement of stem cell material; questions around intel- lectual property rights; and the potentialities of stem cells to treat and regenerate ‘life itself’. it also adds controversy to the long-standing bioethical question surrounding the beginnings and ends of life—where does life begin and at what point does it end? that is, if we can pro- duce and regenerate organs from stem or somatic cells to extend our lives, what are the implications for how we define life and death and the increasingly blurry line between the two? in the first chapter of this section, dead human bodies and embryos, anatomist d. gareth jones considers this question by configuring simi- larities between unborn entities such as the embyro and foetal matter alongside plastinated bodies, as proto-cadavers. jones argues that it may be profitable to view ethical issues surrounding the embryo, repro- ductive technologies, and genetic privacy in conjunction with debates on the adult body, since, from his perspective, they all fall within the ambit of anatomy as the study of the human form and human tissue. an example jones provides is the observation that adult stem cells are on the verge of being de-differentiated to form cells‚ such as neural cells and even more interestingly as gametes, opening the way to the forma- tion of embryos from adult somatic cells. developments of this char- acter demonstrate that the gulf between adult and embryonic cells and tissues is far from impregnable and that the ethical issues met in the two domains have far more in common than generally suspected. jones’s aim in this chapter is to explore what can be learnt from debates within anatomy at the life/death border, such as respect, dignity and consent, and emerging issues at the border between the embryo, foetus and post- natal existence. in the next chapter of the section, casimir macgregor, tristan mccaughey, megan munsie, alice pébay and alex hewitt investigate the creation, and social, ethical and legal issues associated with induced pluripotent stem cells (ipsc), as an alternative to the use of human embryonic stem cells. drawing on results from an in-depth study into research participant motivations for donating tissue for the generation of patient-specific ipscs, the authors examine participant attitudes and understanding of ethical issues surrounding ipsc research. the ques- tion they ask in relation to the informed consent process concerns the

18 r.m. shaw disclosure of information. to what extent are pharmaceutical companies and medical institutions obliged to tell donors about what is going to happen to their tissues, and what does it mean for informed consent when the outcome of highly experimental ipsc research is uncertain? do donors have a right to information about the economic aspects and potential biovalue of their tissue donation? macgregor et al. take the view that current ethical and informed consent practices and guidelines are not adequate for emerging biotechnologies, such as ipscs, and that new methods of communicating informed consent to research partici- pants are required. in the third chapter of this section, on the everyday ethics of stem cell therapies in india, authors nayantara sheoran appleton and aditya bharadwaj draw on fieldwork to discuss the regulatory and bioethical guidance frameworks around stem cell treatment in india, which they describe as in a state of continuous evolution. appleton and bharadwaj contend that while some scholars have identified a regulatory vacuum with regard to stem cell innovation in asian countries, the examination of the everyday complexities of doing stem cell research and treating patients in india allows us to imagine a new bioethics—one that is cog- nisant of its western genealogy, but also accounts for how biomedicine and biotechnologies are lived, experienced and engaged within diverse global spaces. their chapter draws attention to the concerns raised by other researchers about stem cell travel, where adult patients and parents of paediatric patients from around the world travel to clinics to seek (sometimes unproven) therapies, to argue that a singular focus on the global dimensions of bioethics and medical tourism can leave important considerations about local contexts, practices and sites hidden. part ii: assisted human reproduction by the mid- to late 1990s, a new wave of materialist writing began to emerge in the social sciences around assisted human reproduction. this literature has evolved from a focus on the lived experience of peo- ple seeking fertility treatment and the views of donors, to the views of donor-conceived persons and concerns around property rights and www.ebook3000.com

1 bioethics beyond altruism 19 information sharing in relation to donative materials and reproductive labour in the reproscape bioeconomy. the sts wing of this literature has sought to theorise the nature/culture divide and the disaggregation of reproductive biology from its in vivo location and redeployment to other bodies, spaces and times, in addition to citing gametes, embryos, the researcher, the laboratory and laboratory tools as co-producers of new life in this domain. because reproductive tissue such as sperm, oöcytes, and embryos have the potential to create new individuals, rather than saving or improving the quality of another person’s life as is the case with organ transplantation, the regulation of biological matter has the potential to generate polarised bioethical debate. in the first chapter of this sec- tion, sonja goedeke and ken daniels discuss embryo donation by cou- ples who have surplus embryos following in vitro fertilisation (ivf) to other infertile persons. while embryo donation may offer a solution for couples who have completed their families, and for those affected by infertility, it raises significant psychosocial and ethical concerns. in the new zealand context, the donation decision and experience of embryo donation is affected by social and cultural meanings ascribed to embryos as well as to the donation itself. in goedeke and daniels’ chap- ter, decision-making around storing, donating, adopting and discarding embryos ultimately depends on people’s understandings of the moral and ontological status of the embryo, which they flesh out in detail. the next chapter in the section, by ruth fitzgerald and mike legge, draws on ethnographic fieldwork in two new zealand laboratories dealing with technologies to assist human reproduction. in the chap- ter, the authors explore the nature of ethical dilemmas for 14 scientists whose work places them in close clinical contact with clients who seek assisted reproduction that challenges the moral perspectives of the scien- tists charged with providing professional service. fitzgerald and legge’s account intersects with sociological studies of professionals in ivf and hesc science who engage with ‘moral work objects’ such as gametes, embryos and stem cells (ehrich et al. 2008; farsides and scott 2012) as an unavoidable part of their vocational practice. rather than bracket- ing out morality, as scientists are sometimes simplistically portrayed as doing by the media, fitzgerald and legge describe how the reproductive

20 r.m. shaw scientists they observed developed qualities of personal responsibility and self-reflection in response to encountering ethical dilemmas in their routine work practice, thereby accommodating their professional ethics with personal values and beliefs. ethical concerns about assisted human reproduction have long been bifurcated along the lines of the gift/commodity distinction. feminist scholars, in particular, have been critical not only of the commodifica- tion of women’s reproductive capacity and labour but also of reproduc- tive gifting as a socially constructed form of compulsory altruism. in the third chapter in the section on assisted reproduction, walker and van zyl agree that there are a number of convincing reasons why commer- cial surrogacy is and ought to be prohibited. they take the view that arranging surrogate pregnancy according to the norms of the free mar- ket often gives rise to exploitation of the surrogate mother, a violation of her right to participate in medical decision-making, in addition to practices that endanger the health and welfare of the surrogate mother and the intended child (e.g. transferring multiple embryos in the case of ivf). while the authors accept all of these reasons, they maintain that fairness requires that surrogate mothers be compensated for their labour as well as the risks they undertake. to this end, walker and van zyl argue in favour of organising surrogate pregnancy arrangements along the lines of professions such as nursing and teaching, proposing a highly regulated model that can be used in the case of live organ donation as well as gamete and embryo donation. part iii: organ donation and transplantation four chapters in the volume discuss organ transplantation as a routine biomedical technology with the capacity to extend the lives of indi- viduals with end-stage organ disease. three of these chapters examine transplant medicine, the failure of vital organs such as the heart, lungs, liver and kidneys (when dialysis therapy is no longer an option), and the availability of replacement parts from deceased and living donors when those organs ‘give out’. the leading contribution to the section bridges the chapter by walker and van zyl on commercial surrogacy, to discuss www.ebook3000.com

1 bioethics beyond altruism 21 the first successful uterine transplantation in sweden in 2014. although the uterus may be regarded as a non-vital organ that an individual can live without, charlotte kroløkke and michael nebeling petersen argue that in cases of mother-daughter uterine transplants, the uterus gets positioned as a generation builder, reconfiguring cultural percep- tions of vitality and the ethical values of uterine exchange as essential to the privileging of pregnancy and birth as a prerequisite to mother- hood. in contrast to uterine transplantation as a gift-giving act between donors (the woman’s mother, a sibling, mother-in-law or a friend) and recipients (daughter, sister, daughter-in-law or friend) who know one another, kroløkke and petersen show how danish and swedish ethical and media debates frame commercial surrogate pregnancy as exploita- tive of women who lack a bio-intimate connection to one another. a core theme of the chapter is the notion of bio-intimacy, which kroløkke and petersen utilise to discuss the way reproductive and transplantation technologies mobilise body-subjects and, in so doing, create new social and affective relations. in her chapter, geraldine o’brien discusses the reigning discourse of organ transplantation as founded on, and firmly wedded to gift-of-life terminology, a language o’brien argues has the potential to prescribe the transplant experience and recipients’ moral reckoning of it. o’brien’s dis- cussion is based on qualitative research on the lived experience of heart, liver and kidney recipients in australia, who, having received a pre- cious organ, live in constant awareness that they are being scrutinised and judged with respect to their worthiness of the gift. in her chapter, o’brien shows that the experiences of organ transplant recipients are not homogeneous and that the medical and health imperatives imparted to recipients to ‘care for oneself’ are inextricably tied to discourses around ‘healthism’ and moral responsibility. o’brien suggests that the ascription of differing emotional and social values to organs by transplant recipi- ents, and the specific organ received (heart, liver, or kidney) are power- fully consequential for the psychosocial experience of transplantation and the ways in which recipients make meaning of their experience. based on three case studies, the chapter by maureen coombs and martin woods examines how deceased organ donation practices are posi- tioned within the end-of-life care in new zealand hospitals. the authors

22 r.m. shaw discuss a range of issues in relation to decision-making around deceased donation in the intensive care unit context: the determination of death and the perception by donor families that death is more than simply biological, the welfare of the patient in relation to end-of-life care, ques- tions around the salience of bioethical principles such as beneficence, autonomy and consent, the allocation of scarce resources in relation to cultural sensitivities and difference, and the question of competing inter- ests between healthcare staff and families in a context of organ scarcity. in their discussion, coombs and woods identify a series of dilemmas encountered by families and healthcare staff in this environment, to con- clude their chapter with recommendations for practice and policy. ciara kieran’s chapter, which directly engages with the concept of value as a way of thinking about the costs and benefits associated with medical technologies, focuses attention on the strategies of uninsured living-related kidney donors in mexico and their kin recipients’ access to organ transplantation procedures. kierans draws on anthropologi- cal scholarship and sts to argue that the political economy of organ exchange in mexico produces surplus value from the bodies and labour of transplant recipients and their donors. the author’s contention is that there are broader lessons to be learned from the mexican case for think- ing about the changing character of organ exchange elsewhere, with par- ticular reference to the national health service in the uk. part iv: breastmilk exchange the somatic ethics of breastfeeding and breastmilk exchange are his- torical and wide ranging in scope. the discourses associated with these practices, as well as public opinion around breastmilk exchange, are never neutral. contemporary media commentaries about pub- lic breastfeeding, for example, tell us a great deal about gender and women’s place in society, their citizenship rights and what women are permitted to do in public spaces. likewise, the debates about peer-to- peer milk sharing and human milk donation alert us to the visibility and invisibility of women’s embodied affective and reproductive labour. additionally, although breastfeeding is typically regarded as a natural process associated with cisgender women, their biological infants, and www.ebook3000.com

1 bioethics beyond altruism 23 the primacy of the mother-infant dyad, adoptive mothers, men, friends, extended family members, and trans people can breastfeed (diamond 1995; kirkman and kirkman 2001; macdonald et al. 2016; shaw 2004). fiona giles develops this conversation about breastmilk dona- tion in her chapter to draw on the memoir of trevor macdonald, a transgender dad, who, with his partner, became part of a bridging net- work of milk donors and supporters, building relationships with peo- ple they might never have otherwise met. giles provides a case study of the risks and benefits of informal milk sharing within the context of contemporary western mothering, where the norm is exclusive breast- feeding and exclusionary mothering. she shows how a sharing economy builds relational frameworks of embodied care, enacting the values of ‘social maternity’ (shaw 2004) and ‘inclusive breastfeeding’ (tavakoli 2014) as alternatives to isolated and privatised mothering practices. in the final chapter of the volume, rhonda shaw and maggie morgan discuss the ethics of breastmilk donation in a new zealand neonatal intensive care unit (nicu) alongside the burgeoning phe- nomenon of peer-to-peer milk sharing over the internet. they note the current who hierarchy of infant feeding, which recommends breast- feeding, expressed breastmilk, donor breastmilk and formula. the authors argue that, while the use of donor human milk for premature babies in the nicu (and normal birth babies where maternal milk is not available or in low supply), has become the preferred form of infant feeding, breastmilk’s status as ‘liquid gold’ is not absolute. like other contributors to the volume, the authors build on previous work in the social sciences, feminist theory and sts to suggest that the value attrib- uted to breastmilk as a body product, food and/or medicine depends on its ‘career’ history, the way it is shared and the actors involved through- out the course of its exchange. the chapter ends by picking up on key themes from preceding chapters of the volume that link the donation and transformation of human biological materials in moral and bio- intimate tissue economies. while the volume essays vary as to their object of study and their methodological approach, they each dem- onstrate the ongoing contribution of theoretically informed empiri- cal research to bioethical discussions about developments in medicine, health care, and the life sciences.

24 r.m. shaw notes 1. the european union tissue and cells directive (2004: l102/49(18)) states that tissue and cell procurement, ‘should be founded on the phi- losophy of voluntary and unpaid donation, anonymity of both donor and recipient, altruism of the donor and solidarity between donor and recipient’. in the usa, the 1968 uniform anatomical gift act and the 1984 national organ transplant act both call for altruistic donation, referring to the donation of bodily materials and parts as gifts. in line with these documents, the current practice of the australian and new zealand intensive care society (anzics) statement on death and organ donation (2013: 14), ‘is based on the donation of organs and tis- sues being an unconditional altruistic, non-commercial act’. 2. see diprose (2002) and shildrick (2012) for discussions of corporeal generosity and tissue exchange in relation to derrida’s work. 3. see busby et al. (2014) for an alternative perspective, based on altera- tions to the blood economy over the course of the last 50 years. 4. despite concerns that payment will degrade the basis of altruistic dona- tion, major international organisations such as the world medical association and council of europe distinguish between the commer- cialisation of human tissue and organs and recompense for live donation. this has been the position of the international transplantation society since 1985 and was recently endorsed by the uk nuffield council of bioethics (2011) report. the nuffield report defines non-altruistically focused financial incentives to reward living donors and their families from altruistically focused recompense. references ahmed, s. (2004). affective economies. social text, 22(2), 117–139. almeling, r. (2009). gender and the value of bodily goods; commodification in egg and sperm donation. law and contemporary problems, 72(3), 37–58. almeling, r. (2011). sex cells: the medical market in eggs and sperm. berkeley, ca: university of california press. appadurai, a. (1986). introduction: commodities and the politics of value. in a. appadurai (ed.), the social life of things: commodities in cultural perspec- tive (pp. 3–63). cambridge: cambridge university press. www.ebook3000.com

1 bioethics beyond altruism 25 appadurai, a. (1996). modernity at large: cultural dimensions of globalization (pp. 27–47). minneapolis, mn: university of minnesota press. australian and new zealand intensive care society. (2013) the anzics state- ment on death and organ donation (3.2 ed.). melbourne: anzics. acn 057 619 986. bartlett, a., & shaw, r. (2010). mapping the ethics and politics of contempo- rary breastmilk exchange: an introduction. in r. shaw & a. bartlett (eds.), giving breastmilk: body ethics and contemporary breastfeeding practice (pp. 1–8). toronto: demeter press. berlant, l. (2008). the female complaint. durham: duke university press. bharadwaj, a. (2008). biosociality to bio-crossing: encounters with assisted conception and embryonic stems cells in india. in s. gibbon and c. novas (eds.), genetics, biosociality and the social sciences: making biologies and iden- tities (pp. 98–116). london: routledge. birch, k. (2012). knowledge, place, and power: geographies of value in the bioeconomy. new genetics and society, 31(2), 183–201. birch, k., & tyfield, d. (2012). theorizing the bioeconomy: biovalue, bio- capital, bioeconomics or … what? science, technology and human values, 38(3), 299–327. boyer, k. (2010). of care and commodities: breast milk and the new politics of mobile biosubstances. progress in human geography, 34(1), 5–20. busby, h., kent, j., & farrell, a.-m. (2014). revaluing donor and recipient bodies in the globalized blood economy: transitions in public policy on blood safety in the united kingdom. health: an interdisciplinary journal for the social study of health. illness & medicine, 18(1), 79–94. carroll, k. (2014). body dirt or liquid gold? how the ‘safety’ of donated breastmilk is constructed for use in neonatal intensive care. social studies of science, 44(3), 466–485. carter, s. k., & reyes-foster, b. m. (2016). pure gold for broken bodies: discursive techniques constructing milk banking and peer milk sharing in u.s. news. symbolic interaction, 39(1), 353–373. cohen, l. (2005). operability, bioavailability, and exception. in a. ong, & s. j. collier (eds.), global assemblages: technology, politics, and ethics as anthropological problems (pp. 79–90). malden, ma: blackwell. collier, s. j. & ong, a. (2005). global assemblages, anthropological prob- lems. in a. ong, & s. j. collier (eds.), global assemblages: technology, politics, and ethics as anthropological problems (pp. 3–21). malden, ma: blackwell.

26 r.m. shaw cooper, m. (2008). life as surplus: biotechnology and capitalism in the neoliberal era. seattle: university of washington press. cooper, m., & waldby, c. (2014). clinical labour: tissue donors and research subjects in the global bioeconomy. durham, nc: duke university press. delmonico, f. l., arnold, r., scheper-hughes, n., siminoff, l. a., kahn, j., & youngner, s. j. (2002). ethical incentives—not payment—for organ donation. the new england journal of medicine, 346(25), 2002–2005. derrida, j. (1992). given time: 1. counterfeit money. chicago: university of chicago press. diamond, j. (1995). father’s milk. discover, 6(2), 82–87. dickenson, d. (2008). body shopping: converting body parts to profit. oxford: oneworld books. diprose, r. (2002). corporeal generosity: on giving with nietzsche, merleau- ponty and levinas. albany, ga: state university of new york. ehrich, k., williams, c., & farsides, b. (2008). the embryo as moral work object: pgd/ivf staff views and experiences. sociology of health & illness, 30(5), 772–787. epstein, m., & danovitch, g. (2009). is altruistic-directed living unrelated organ donation a legal fiction? nephrology, dialysis, transplantation, 24, 357–360. european union tissue and cells directive. (2004). retrieved november 17, 2016, from http://eur-lex.europa.eu/lexuriserv/lexuriserv.do?uri=oj:l:2 004:102:0048:0058:en:pdf. farsides, b., & scott, r. (2012). no small matter for some: practitioners’ views on the moral status and treatment of human embryos. medical law review, 20, 90–107. foucault, m. (1984). the history of sexuality: an introduction. (r. hurley, trans.). london: penguin books. fox, r. c., & swazey, j. p. (1978). the courage to fail: a social view of organ transplants and dialysis. chicago: university of chicago press. ghods, a. j. (2004). governed financial incentives as an alternative to altru- istic organ donation. experimental and clinical transplantation, 2(2), 221– 228. gilligan, c. (1982). in a different voice: psychological theory and women’s devel- opment. cambridge, ma: harvard university press. gribble, k. d. (2014). i’m happy to be able to help. why women donate to a peer via internet-based milk sharing networks. breastfeeding medicine, 9(5), 251–256. www.ebook3000.com

1 bioethics beyond altruism 27 haimes, e. (2016). i wouldn’t put them on ebay!: discourses on money, mar- kets and meanings amongst ivf patients volunteering for a uk ‘egg sharing for research’ scheme. in e. malmqvist & k. zeiler (eds.), bodily exchanges, bioethics and border crossing: perspectives on giving, selling and sharing bodies (pp. 52–69). london: routledge. haimes, e., taylor, k., & turkmendag, i. (2012). eggs, ethics and exploita- tion? investigating women’s experiences of an egg sharing scheme. sociology of health & illness, 34(8), 1199–1214. hardt, m. (1999). affective labour. boundary, 2, 89–100. hardt, m., & negri, a. (2000). empire. cambridge, ma: harvard university press. hassan, n. (2010). milk markets: technology, the lactating body, and new forms of consumption. women’s studies quarterly, 38(3 & 4), 209–228. healy, k. (2006). last best gifts: altruism and the market for human blood and organs. chicago: chicago university press. hochschild, a. r. (1983). the managed heart: commercialization of human feeling. berkeley: university of california press. hochschild, a. r. (2012). the outsourced self: intimate life in market times. new york: metropolitan books. hoeyer, k. (2013). exchanging human bodily material: rethinking bodies and markets. new york: springer. inhorn, m. c. (2011). globalization and gametes: reproductive tourism, islamic bioethics, and middle eastern modernity. anthropology & medicine, 18(1), 87–103. inhorn, m. c. (2015). cosmopolitan conceptions: ivf sojourns in global dubai. durham: duke university press. inhorn, m. c., & gürtin, z. b. (2011). cross-border reproductive care: a future research agenda. reproductive biomedicine online, 23, 665–676. jeffries, v., johnston, b. v., nichols, l. t., oliner, s. p., tiryakian, e., & weinstein, j. (2006). altruism and social solidarity: envisioning a field of specialisation. the american sociologist, 37(3), 67–83. jones, d. g. (2002). the use of human tissue: an insider’s view. new zealand bioethics journal, 3(2), 8–12. kirkman, m., & kirkman, l. (2001). inducing lactation: a personal account after gestational ‘surrogate motherhood’ between sisters. breastfeeding review, 9(3), 5–11.

28 r.m. shaw kroløkke, c. (2015). have eggs will travel: the experiences and ethics of global egg donation. journal of somatechnics (special issue on medical travel and bioethics), 5, 12–31. kroløkke, c. (2016). jetlagged and bloated: egg provider tourism and trans- formations. in s. lundin, m. n. petersen, c. kroløkke, & e. muller (eds.), global bodies in grey zones: health, hope, biotechnology (pp. 75–89). stellenbosch: sun media. lock, m., & nguyen, v.-k. (2010). an anthropology of biomedicine. malden, ma: wiley-blackwell. lundin, s. (2016). fieldwork in grey zones: a case study on organ trafficking in the philippines. in s. lundin, m. n. petersen, c. kroløkke, & e. muller (eds.), global bodies in grey zones: health, hope, biotechnology (pp. 47–71). stellenbosch: sun media. lundin, s., petersen, m. n., kroløkke, c., & muller, e. (eds.). (2016). global bodies in grey zones: health, hope, biotechnology. stellenbosch: sun media. macdonald, t., noel-weiss, j., west, d., walks, m., biener, m., kibbe, a., et al. (2016). transmasculine individuals’ experiences with lactation, chest- feeding and gender identity: a qualitative study. bmc pregnancy and childbirth, 1(106), 2–17. malmqvist, e., & zeiler, k. (eds.). (2016). bodily exchanges, bioethics and border crossing: perspectives on giving, selling and sharing bodies. london: routledge. mauss, m. ([1950] 1990). the gift: the form and reason for exchange in archaic societies (w. d. halls, trans.). new york: w.w. norton. moniruzzaman, m. (2012). living cadavers. in bangladesh: bioviolence in the human organ bazaar. medical anthropology quarterly, 26(1), 69–91. murphy, e. (2000). risk, responsibility, and rhetoric in infant feeding. journal of contemporary ethnography, 29(3), 291–325. murray, t. h. (1987). gifts of the body and the needs of strangers. hastings center report, 17, 30–38. novaes, s. b. (1989). giving, receiving, repaying: gamete donors and donor policies in reproductive medicine. international journal of technology assessment in health care, 5, 639–657. novas, c. (2006). the political economy of hope: patients’ organizations, sci- ence and biovalue. biosocieties, 1, 289–305. nuffield council on bioethics. (2011). human bodies: donation for medicine and research. retrieved december 30, 2012, from http://www.nuffieldbio- ethics.org/sites/default/files/donation_full_report.pdf. www.ebook3000.com

1 bioethics beyond altruism 29 oakley, b., knafo, a., madhavan, g., & wilson, d. s. (eds.). (2012). pathological altruism. oxford: oxford university press. pande, a. (2015). the kin labor in kinship travel: intended mothers and surro- gates in india. anthropologica: canada’s anthropology journal, 57(1), 53–62. parry, b. (2007). entangled exchange: reconceptualising the characterisation and practice of bodily commodification. geoforum, 39, 1133–1144. pennings, g. (2015). central role of altruism in the recruitment of gamete donors. monash bioethics review, 33(1), 78–88. post, s. g. (ed.). (2007). altruism and health: perspectives from empirical research. oxford: oxford university press. rabinow, p. (1992). artificiality and enlightenment: from sociobiology to biosociality. in j. crary, & s. kwinter (eds.), zone 6: incorporations (pp. 234–252). new york: zone. rajan, k. s. (2006). biocapital. durham: duke university press. rose, n. (2001). the politics of life itself. theory, culture and society, 18(6), 1–30. rose, n. (2007a). the politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. princeton: princeton university press. rose, n. (2007b). molecular biopolitics, somatic ethics and the spirit of bio- capital. social theory & health, 5, 3–29. rose, n. (2008). the value of life: somatic ethics & the spirit of biocapital, daedalus, 137(1), 36–48. rose, n., & novas, c. (2005). biological citizenship. in a. ong, & s. j. collier (eds.), global assemblages: technology, politics, and ethics as anthropological problems (pp. 439–463). malden, ma: blackwell. ryan, k., team, v., & alexander, j. (2013). expressionists of the twenty-first century: the commodification and commercialization of expressed breast milk. medical anthropology: cross-cultural studies in health and illness, 32, 467–486. shaw, r. (2004). the virtues of cross-nursing and the ‘yuk factor’. australian feminist studies, 19(45), 287–299. shaw, r. m. (2008a). the notion of the gift in the donation of body tissues. sociological research online, 13(6). shaw, r. m. (2008b). rethinking reproductive gifts as body projects. sociology, 42(1), 11–28. shaw, r. m. (2012). thanking and reciprocating under the new zealand organ donation system. health: an interdisciplinary journal for the social study of health. illness & medicine, 16(3), 295–310.

30 r.m. shaw shaw, r. m. (2015). ethics, moral life and the body: sociological perspectives. houndmills, basingstoke: palgrave macmillan. shildrick, m. (2012). hospitality and the “gift of life”: reconfiguring the other in heart transplantation. in s. gonzalez-arnal, g. jagger, & k. lennon (eds.), embodied selves (pp. 196–208). new york: palgrave macmillan. shrift, a. d. (1997). introduction: why gift? in a. d. schrift (ed.), the logic of the gift: toward an ethic of generosity (pp. 1–22). new york: routledge. skloot, r. (2010). the immortal life of henrietta lacks. new york: crown. swanson, k. (2014). banking on the body: the market in blood, milk, and sperm in modern america. cambridge, ma: harvard university press. tavakoli, a. (2014). defining my breastfeeding experience: inclusive breast- feeding. retrieved september 13, 2016, from http://www.sdbfc.com/ blog/2014/6/2/defining-my-breastfeeding-experience-inclusive-breastfeed- ing.html. team, v., & ryan, k. (2014). expressed breast milk as commodity: disembodied motherhood and involved fatherhood. in m. nash (ed.), reframing reproduction: conceiving gendered experiences (pp. 221–235). houndmills, basingstoke: palgrave macmillan. thompson, c. (2005). the ontological choreography of reproductive technologies. cambridge, ma: mit press. titmuss, r. m. ([1970] 1997). in a. oakley & j. ashton (eds.), the gift rela- tionship: from human blood to social policy. new york: the new press. waldby, c. (2000). the visible human project: informatic bodies and posthuman medicine. london: routledge. waldby, c. (2002). stem cells, tissue cultures and the production of biovalue. health: an interdisciplinary journal for the social study of health, illness and medicine, 6(3), 305–323. waldby, c., & mitchell, r. (2006). tissue economies: blood, organs and cell lines in late capitalism. durham: duke university press. waldby, c., & cooper, m. (2008). the biopolitics of reproduction. australian feminist studies, 23(55), 57–73. waldby, c., & cooper, m. (2010). from reproductive work to regenerative labour: the female body and the stem cell industries. feminist theory, 11(1), 3–22. weiss, r., & peres, p. (2014). beyond the altruism–egoism dichotomy: a new typology to capture morality as a complex phenomenon. in v. jeffries (ed.), the palgrave handbook of altruism, morality, and social solidarity (pp. 71–97). new york: palgrave macmillan. www.ebook3000.com

2 dead human bodies and embryos: commonalities and disparities in ethical debate d. gareth jones introduction in the context of this book, a chapter devoted to anatomy may appear anomalous, since the picture generally conveyed by anatomy is one of ‘deadness’. this is the picture conveyed by the traditional dissecting room, where deadness reigns supreme. a decidedly different picture is presented by reproductive technologies, centring on manipulation of the embryo. these technologies have spawned a plethora of ethical debates, with the biological and moral status of the embryo emerging as pivotal. these two areas are all too readily regarded as separate, when in practice the embryo is as much an object of interest for anatomists as the dead adult body. the aim of this chapter is to demonstrate that these two pictures need to be nuanced in order to understand how the anatomical sciences can contribute to a better appreciation of issues d.g. jones (*) university of otago, dunedin, new zealand e-mail: gareth.jones@otago.ac.nz © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_2 35

36 d.g. jones around the donation of embryonic, foetal and adult human organs and tissues. the converse may also apply. in exploring these dimensions, a number of debates spanning adult and embryonic themes will be assessed. the former touches on issues around the use of bequeathed (as opposed to unclaimed) human bodies for dissection, and those raised by the technique of the plastination of dissected human bodies, particularly when whole body plastinates are displayed in public. the embryonic themes concern the use of embryos for therapeutic and research purposes, including in vitro fertilization (ivf), while themes presented by embryos at a later stage of develop- ment touch on the use of foetal tissue in research and therapy. although these matters are usually discussed in isolation of one another, they all concern human tissue, suggesting that they should share common the- matic threads. my aim is to explore the degree to which it is possible to bring these two areas together by assessing their commonalities and disparities. i shall propose one means of doing so, and that is by employing the concept of ’proto-cadaver’, which aims to examine how elements of our approach to cadavers may be solicited to understand the living and yet not fully formed embryo/foetus. use of bequeathed as opposed to unclaimed bodies the world of twenty-first-century anatomy is far removed from that of the late eighteenth and early nineteenth centuries, and yet there is much to be learned from the activities of those early periods—including their range of questionable practices. from today’s perspective, the ethical base from which modern anatomy has arisen was fragile. bodies were required for teaching medical students the elements of anatomical struc- ture, and this was a major problem. where were they to come from? questionable practices included use of the bodies of criminals, the poor, the marginalized and the outcasts of society. in short, the bodies were frequently those of the weak and defenceless. www.ebook3000.com

2 dead human bodies and embryos: commonalities … 37 from these dubious beginnings, the subsequent history of early anat- omy was fraught with suspect practices, including a dependence upon illegal grave robbing. once legislation intervened in the early part of the nineteenth century, the preeminent solution was the use of unclaimed bodies (richardson 2001; macdonald 2010). however, even this was ethically dubious, although it was the dominant source of bodies for many years and remains so in many societies (jones and whitaker 2012). the fact that this was regarded as the one institutionally rec- ognized and legitimate source of bodies for dissection for many years speaks volumes about the lack of ethical enquiry on the part of anato- mists and allied health professionals. while this is of little more than historic interest in many societies, it remains of pressing ethical concern in those societies still dependent upon the use of unclaimed bodies. it is also of concern for the wider anatomical community (gunderman 2008; mchanwell et al. 2008; ifaa 2012; riederer et al. 2012). unclaimed bodies are very often considered of little value to any- one other than anatomists, even though there may be estranged fam- ily who would have been interested had they been made aware of the death. those whose bodies are made available in this manner have been stigmatized, whether they are poor, marginalized or disadvantaged on racial or cultural grounds. on occasion, this practice has provided jus- tification for removing bodies from graves without permission, and in more extreme cases, murder (dasgupta 2004). frequently, the use of unclaimed bodies was justified financially, in that it saved state resources that would otherwise have been expended on proper burial. elements of this historic situation still occur today in a number of countries, including south africa, other african countries including nigeria, bangladesh, brazil and india (for details, see jones and whitaker 2012). it has been argued that anatomists should not continue to use unclaimed bodies (jones and whitaker 2012). idealistic as this may seem to those in some societies, it protects the anatomy profession from unethical practices that have proved rampant in some countries and at various historical peri- ods. it also flies in the face of ethical expectations across the health sciences and in clinical practice. as such, the use of bodies and body parts that have not been specifically donated for dissection sends a message to others that informed consent is of little significance at death. (riederer 2016)

38 d.g. jones arguments against the use of unclaimed bodies are important. yet, by themselves, they fail to indicate with any precision the ethical values enshrined in the use of bequeathed bodies. one means of doing this is to point to the moral values governing organ donation (vawter et al. 1990). these include autonomy, the interests of family members, altru- ism and their redemptive aspect. of these, altruism is the value on which the greatest attention is routinely placed, the thrust of which is that it is preferable to give than receive, since the good of others is bet- ter than self-interest (may 1985). central to this value is the notion of gift, whereby an organ or body is given to others for their benefit— whether health-related or educational. these values were debated at length around the year 2000 in the uk when a number of scandals, arising mainly in pathological services, led to the establishment of formal committees of enquiry. these scan- dals were precipitated by a serious lack of ethical awareness as to why the human body and human tissue should be treated with dignity and respect (jones and whitaker 2009). among the guidelines formulated at the time are the importance of treating the person who has died and their families with respect, the central value of informed consent and the significance of a gift relationship, in which the balance moves from ‘taking’ and ‘retaining’ of organs to ‘donation’ (department of health 2001; retained organs commission 2002). in various ways, these guidelines place the onus upon the interests of the deceased and their grieving families, rather than upon those wishing to make use of the tissue after death. this serves as a compelling ration- ale for the ethical superiority of bequeathed bodies in anatomy (jones 1994a). use of bequests acknowledges the dual importance of teaching and research alongside the place of informed consent and related ethical considerations (jones 2002). the end result of the establishment of a bequest ethos is a change in ethical trajectory, affecting all uses of human tissue. this needs to be borne in mind when attention is directed towards embryos and foe- tuses. however, there is an additional area to be considered in relation to adult bodies, and this is the dissection and subsequent plastination of human bodies and body parts. www.ebook3000.com

2 dead human bodies and embryos: commonalities … 39 whole body plastination and the status of plastinates encountered in a dissecting room or sterile laboratory environment, the lifelessness of the dead human body may appear forbidding. however, it can be made more welcoming by giving it an attractive façade. for example, what if it were to be displayed vertically as if it were still alive and functioning? what if it were to give the impression that it is playing a sport? these are the intentions of the major exhibitions of plastinated and dissected dead bodies open to the general public (von hagens and whalley 2000; king et al. 2014). the end result is a stunningly impres- sive display of life-like human remains. in this discussion, my empha- sis is on the work of gunther von hagens and the body worlds public exhibitions, in which the bodies have been donated for public display (institute for plastination 2008). in essence, plastination is a technique that replaces tissue fluids with plastics (von hagens 1979). by itself, this raises few queries or con- cerns; it is a teaching tool that can also be adapted to research ends (riederer 2014). if that was the extent of its use, there would have been no wide-scale ethical or social debate. but by displaying whole bodies in a variety of poses, dissected to display bodily systems, organs and mus- cles in an attempt to replicate sporting and related activities, the essence of anatomical education has been transmuted. does this have implica- tions for an understanding of our treatment of the dead human body? whole body plastinates are ambiguous because they cannot read- ily be slotted into familiar human categories. they are neither human body nor human person, fitting uneasily between the two (as discussed in other contexts by hoeyer 2013; taussig et al. 2013). they look like us, but they also differ from us. most disquieting is uncertainty over whether they are dead, since their apparent lifelikeness and ‘activity’ are characteristics of the living (skulstad 2006). lizama (2009: 21) thinks they project a ‘melancholic sadness over the loss of both life and death’. contributing to this ambiguity is the physical indestructibility of plastinated remains, including plastinates. it is this that has led to claims that they have attained a form of post-mortem physical existence

40 d.g. jones (von hagens 2001: 259; von hagens and whalley 2000: 36); they are even thought of as ‘post-mortal’ (prnewswire 2006). this takes discus- sions about their significance beyond the physical and into philosophi- cal and theological realms. a number of writers have suggested that plastination is being used as a means of replacing religious notions of resurrection with a new kind of ‘fleshliness’ (preuss 2008: 28; linke 2005; moore and brown 2004; fischer 2000). regardless of the terms employed, ‘post-biological existence’ amounts to nothing more than ‘a synthetic afterlife, unable to ever attain organic death or incorporeal res- urrection’ (lizama 2009: 26); they are as static as any other dead bodies. do plastinates accurately represent the individuals who once lived? the answer is ‘yes’ and ‘no’. they do in the sense that it was real indi- viduals who were dissected. however, the technicians who undertook the plastination modified them in order to make the plastinates appear life-like, and it is these interventions that distance the bodies from their natural state (jones 2016). the fundamental changes to the composition of the bodies ensure their presentability, structural integrity and longevity and are of major significance for anatomists studying these human remains. but they detract from their alleged ‘realness’, even though substantial elements of the individuality of the individual continue to be present. some com- mentators argue that the intrusion of the artificial makes them ‘hyper- real’ (stern 2006; desmond 2010), and little more than representations of real bodies (van dijck 2001). this discussion of plastination has presumed that the bodies have been donated following fully informed consent (this is true of body worlds but of none of the other exhibitions). however, to what extent has the donation been altruistic in the sense that the bodies have been donated with the intention of benefitting others? in the case of body worlds exhibitions, the major beneficiary is the institute for plastination, a commercial venture aimed at taking anatomy to the gen- eral public. in this sense, there are those who benefit—the organization itself and the paying public, and this benefit has an educational ration- ale. the ethical challenge is to balance the extent of this benefit against the manner in which the donated bodies have been transformed to give an impression that they have abilities they never possessed. this concern www.ebook3000.com

2 dead human bodies and embryos: commonalities … 41 would not surface to the same degree if the exhibitions only contained plastinated body parts and organs. the crux of concern stems from the ‘post-mortal’ and ‘post-biological’ pretensions, suggesting that the plas- tinated remains are something they have never been: the office worker depicted as a basketball player or ballet dancer. in surveying these aspects of the plastination process, we are intro- duced to the manner in which technology has impinged upon the dead human body. the goals of this procedure are not principally research- based, but they demonstrate what can be accomplished. this constitutes a surprising launch pad for investigating the research uses of foetal and embryonic tissues, since in their different ways they all depend upon the ability to manipulate human material. use of foetal tissue in research and therapy foetal tissue research initially hit the headlines in the 1980s, although foetal tissue had been used in research as far back as the 1930s (greely et al. 1989). however, it was proposals in the 1980s that elicited wide- spread debate against the background of the ongoing contentious debate around abortion (mahowald et al. 1987; jones 1991). the con- text in the 1980s was provided by the possibilities appearing at that time of grafting foetal neural tissue into the brains of patients with advanced parkinson’s disease as a means of ameliorating some of the debilitating effects of the disease (sladek and shoulson 1988; for update see barker et al. 2013). foetal tissue transplantation in the form of neural grafts that led to these guidelines has proved a disappointment and has been replaced in more recent years by an interest in the potential of stem cells (ali et al. 2014). while the latter have a number of sources, the employment of embryonic stem cells (escs) derived from embryos has reignited ethi- cal debate, this time casting embryos, as opposed to foetuses, into the spotlight (see use of embryos for therapeutic and research purposes). interestingly, the fundamental ethical dilemma encountered in the use of foetal tissue from abortuses is almost identical to that found in the use of stem cells from embryos. in both cases, early human forms are

42 d.g. jones being ‘sacrificed’ for medical research or treatment, and yet in both instances neither the embryos nor foetuses would have developed any further for reasons that have nothing to do with their research or thera- peutic potential. the use of foetal tissue would have remained quiescent in general public debate, had it not been for the accusations by the center for medical progress and other pro-life groups in the usa on what they regard as the illicit activities of planned parenthood. although the debate centred on the alleged sale of foetal tissue and profit making by planned parenthood, it has once again raised questions about the justifi- cation of using foetal tissue from abortions (servick 2015). in the wake of the antagonism to planned parenthood from some quarters in the usa, there have been concerted efforts by researchers to highlight the benefits of using foetal tissue in research on diseases and conditions as varied as aids and spinal cord injuries, macular degener- ation and the development of a potential ebola vaccine, to juvenile dia- betes, huntington’s disease, immune system defects and autism (binkley and johnson 2015; charo 2015; holt 2015). it has also been repeatedly pointed out that vaccines have been one of the chief public health ben- efits of this research. opposition to the use of foetal tissue from induced abortions is closely tied in with opposition to abortion (e.g. rae 1991; lee et al. 2015), a relationship that is particularly evident in the usa. however, the debate on the use of foetal tissue also entails how best to respond to the princi- ple of moral complicity (see below), the potential medical benefits prom- ised by research on the developing human and the best way of balancing these benefits against the perceived loss inherent within abortion. even though every attempt is made to isolate foetal research from abortion in practical terms (an ethical requirement), conceptually, the feasibility of the one (research) is dependent on the reality of the other (abortion). the foetuses that are available for use cannot develop any further for reasons originating in external factors—namely on the rea- sons for the abortion. during the 1970s and 1980s, concerns were raised about the nature of the foetal research and therapy then underway. committees and work- ing groups examined the issues in the uk (peel committee 1972), the www.ebook3000.com

2 dead human bodies and embryos: commonalities … 43 usa (national commission 1975) and australia (national health and medical research council 1984). these concluded that experimentation on live, previable foetuses was permissible within certain limits, on the grounds that important biomedical knowledge could not be obtained by alternative means. in the wake of the developments regarding neu- ral grafting in the 1980s, an nih panel was established in the usa (consultants 1988) and emerged with the following recommendations: • the decision to terminate a pregnancy and the procedures of abor- tion should be kept independent from the retrieval and use of foetal tissue; • payments and other forms of remuneration and compensation asso- ciated with the procurement of foetal tissue should be prohibited, except payment for reasonable expenses; • the decision and consent to abort must precede discussion of the possible use of the foetal tissue and any request for such consent; • the pregnant woman should be prohibited from designating the transplant-recipient of the foetal tissue; • anonymity between donor and recipient should be maintained; • the timing and method of abortion should not be influenced by the potential uses of foetal tissue for transplantation and medical research. in the early discussions around neural grafting, a special report in the new england journal of medicine put forward a series of proposals (greely et al. 1989). the one of direct relevance for the present chapter is that ‘human foetal tissue should generally be treated with the respect given cadavers’. these and subsequent guidelines (american medical association 1994) stem from a ‘good consequences’ stance, highlighting the anticipated ben- efits of potential value to medicine. related to this is the stipulation that knowledge of this kind cannot be obtained using animal models. the crux of the various guidelines is that, once it can be exposed to risk, the previable foetus has no future as a living individual, and any harm resulting from the research is of little consequence compared with the much greater harm caused by the abortion. and so, if abortion is allowa- ble, so is research on the foetus: the one follows inexorably from the other.

44 d.g. jones inherent within these guidelines is a particular stance on the status of the foetus, namely that it has an intermediate status between complete protection and no protection at all. these guidelines do not express the view that the human foetus is to be accorded the status of a person with the full moral value of a person, but neither do they view the foetus as a non-personal entity. none of the guidelines concludes that it legiti- mizes all research, but those who may benefit from foetal research are seen as having greater value than the relatively few foetuses on which research will be carried out. since these foetuses will never be able to realize their potential as fully developed persons, it is ethical to use them for the good of medical science and therefore for the good of other foe- tuses that will realize this potential at some future time. four major positions have emerged in viewing non-therapeutic research on live previable foetuses before, during or after induced abor- tion (walters 1975). these are (a) prohibition; (b) allowed with no restrictions; (c) allowed under precisely the same conditions as research permitted on children and on foetuses that will continue to term; (d) allowed with less restrictions than in (c). separation of the foetal tissue research from the abortion is the fun- damental ethical requirement and can be accomplished ethically even if the abortion is considered to be unethical or morally problematic by reference to the concept of moral complicity. this contends that the evil of an action (abortion in this instance) carries over into any subse- quent use of the material, no matter how beneficial it may be regarded (research). this concept can be accepted or rejected. if rejected, it is possible to separate the subsequent good action from the original prob- lematic action, on the condition that there is total separation of the two in practice. strong (1991) contends: ‘transplantation and research involving human foetal tissue appear ethically justifiable because the degree of wrongness that might be involved seems relatively low, no right would be violated [assuming consent has been given], at least some benefit is reasonably expected, and great benefits are possible’. throughout this debate, the relationship between how foetal tissue is treated and how adult tissue is treated is a close one, with the latter being used as a model for the former. nevertheless, they are not identi- cal, since foetal tissue is far more dependent upon decisions made by www.ebook3000.com

2 dead human bodies and embryos: commonalities … 45 others—the pregnant woman and her decision to have an abortion, and the needs of researchers for foetal tissue. this duality points to the social, cultural and research contexts within which foetal tissue becomes available for study. these issues are magnified when attention is directed at embryos, with the manifold possibilities they present for research into develop- mental biology and for therapeutic applications of this research. use of embryos for therapeutic and research purposes the ability to isolate embryos in the laboratory has ushered in rich prospects for manipulation. over the past 30 years, this has led soci- eties to elaborate ethical principles to guide their treatment of human embryos. in the light of the early successes of ivf in the clinic and the research laboratory in the uk, the warnock committee report (1984) arrived at a number of principles that subsequently served as the basis of the 1990 human fertilisation and embryology act, and have guided approaches to embryo research in many other societies. these are: • the embryo of the human species has a special status, but not the same status as a living child or adult. • the human embryo is entitled to a measure of respect beyond that accorded to an embryo of other species. • such respect is not absolute and may be weighed against the benefits arising from proposed research. • the embryo of the human species should be afforded some protec- tion in law. these principles lead to the view that a collection of four or sixteen cells is so different from a full human being, a newborn baby or an advanced foetus, that it might legitimately be treated differently (warnock 1985). this is a moral judgment, dependent upon the value ascribed to very early human embryos, which the committee defined as those up to 14-days gestation. in the committee’s view, such embryos could be

46 d.g. jones used for research purposes if the resulting benefits were considered to be substantial. the report contended that research should be embryo-related, including applied research with direct diagnostic or therapeutic benefits for the human embryo. the 14-day limit for research was chosen on the basis of the appearance of the primitive streak at around 15 days, which in the committee’s view marks the beginning of individual develop- ment of the embryo; it also corresponds to the end of the implantation stage. while this point is far from definitive, it has proved a useful land- mark from many perspectives (see mclaren 1984, 1986). the solidity of the 14-day limit has remained unscathed, in spite of questions regarding the assurance of its ethical and scientific credentials. in large part, this has been due to the lack of demand to extend the time period on account of the difficulties in maintaining embryos in culture beyond around 9 days. all this changed with the publications by deglincerti et al. (2016) and shahbazi et al. (2016) of their success in growing human embryos in the laboratory for up to 13 days. this has raised the possibility of culturing embryos beyond the 14-day limit. the prospects for understanding the later stages of early human devel- opment with a previously unknown degree of precision are tantalizing for developmental biologists and have led to calls to revisit the 14-day rule (hyun et al. 2016; rossant 2016). to do this would question the alleged significance of the appearance of the primitive streak, the con- cept of individuation and the ethical arguments based on these. it will also raise the question of what limit would replace 14 days. is it to be 21 days, and what criteria will be provided to justify this? the more recent debate on stem cell research started from the legal position enshrined in the 1990 act (see the reports by the nuffield council on bioethics 2000, and the department of health 2000). a significant extension has been to allow research into potential therapies on the basis that each form of research involves using the embryo as a means to an end (nuffield council on bioethics 2000). as in the case of foetal research, a balance is to be attained between any potential health benefits for others and any negatives associated with using embryos at an early stage of their development. www.ebook3000.com

2 dead human bodies and embryos: commonalities … 47 throughout these discussions, the notion of respect is never far from the surface (jones 2006), although its vagueness means that the way in which it is applied can be readily adjusted. for instance, when sur- plus embryos (from ivf programmes) that would otherwise have been allowed to perish are used for research purposes, some argue that this does not indicate lack of respect for those embryos or for embryos in general (nuffield council on bioethics 2000). by contrast, the delib- erate creation (and by implication destruction) of embryos for research may be seen as demonstrating a lack of respect for them. however, in the uk, the latter stipulation was later removed (see hfea 2012), demonstrating the flexible nature of the related concepts of respect and status. the boundaries in both instances are unclear and hence capable of being moved with relative ease (jones 2006). developmental considerations by 5–7 days, the developing embryo has an internal cavity, the blas- tocyst. the outer cells form a surface layer, the trophectoderm, which becomes the trophoblast when implantation occurs into the wall of the mother’s uterus (completed by 14 days). these trophoblastic cells even- tually give rise to the placenta. by contrast, the inner cells within the blastocyst constitute the inner cell mass (icm) and are still undiffer- entiated, and it is from a small number of these cells that the future individual arises. it is from some of these cells at 4–5 days that human embryonic stem cells (hescs) can be isolated and cultured, demon- strating that individual cells from the icm of the human blastocyst are capable of forming any cell type in the body. in advancing the debate on what can and cannot be done with and to embryos, scientific pointers such as these become crucial. the first of these alludes to the initial appearance of a nervous system, since prior to this point the developing entity lacks a means for functioning as an inde- pendent entity or for responding to its environment (jones and telfer 1995). the quest for a neurological marker of the first events of human life owes its impetus to the perceived symmetry between processes at the beginning and end of life: brain birth in contrast to brain death.

48 d.g. jones unfortunately, this approach does not prove helpful in dealing with the early embryo. this is because the timing of brain birth is probably not until as late as 24–36 weeks (gertler 1986; burgess and tawia 1996) in terms of the presence of an integrated neural organization to serve as the substratum from which self-consciousness and personal life subsequently emerge (jones 1998). consequently, the notion of brain birth provides little guidance on how early human embryos should be treated. the first 14 days of embryonic development have traditionally been set apart from subsequent stages, on account of their pre-implantation status and on the possibility of twinning. however, these embryological features were not generally considered sufficiently distinctive to bestow a separate classification upon this 14-day period. this situation changed when the term pre-embryo was derived to designate ‘the entire product of the fertilized egg up to the end of the implantation stage’; and the term embryo for ‘that small part of the pre-embryo or conceptus, first distinguishable at the primitive streak stage, that later develops into the foetus’ (mclaren 1986). mclaren’s view is a reductionist one that pays too little attention to the role of the support tissues, which are as essen- tial for biological development of the early embryo as they are for the later foetus (jones and telfer 1995). it also overlooks the potential of icm cells to produce stem cells and significant features of the future individual. it has generally been considered that the blastocyst has moral value and should be treated with respect. however, it is generally assumed that such blastocysts are in utero, whereas the blastocysts on which research is conducted are in vitro—in the laboratory. consequently, the 4–6-day-old in vitro blastocyst is in an environment in which it cannot develop further, unless it is implanted in a woman’s uterus (jones 2005). this suggests there may be a distinction to be drawn between ‘blas- tocysts within an environment congenial to further development’ as against ‘blastocysts within an environment hostile to further devel- opment’ (jones 2005, 2006). the first situation has the potential of producing a human individual; the second has no such potential, espe- cially since research beyond 14 days is currently forbidden. this means that all blastocysts are not equal biologically when maintained in a www.ebook3000.com

2 dead human bodies and embryos: commonalities … 49 laboratory environment. does this have implications for their moral sta- tus (mcgee and caplan 1999)? another factor that may influence the way in which blastocysts are viewed is the manner in which they are brought into existence. somatic cell nuclear transfer (scnt) demonstrates that the full genetic comple- ment of an adult cell can be reactivated well into the chronological life of the cell (wilmut et al. 1997). central to this is the ability of differ- entiated cells to revert to totipotency, involving the reprogramming of one cell type to produce all the other cell types necessary for the devel- opment of a complete organism. the product would appear to be an embryo, theoretically capable of developing into a new individual, even in the absence of sperm and egg. the prospects appear to be endless, especially with the emergence of induced pluripotent stem cells (ipscs) derived from differentiated cells and potentially capable of producing gametes (takahashi et al. 2007). the purpose of referring to these possibilities is not to trace them any further, but to hint at the prospects opening up for utilizing devel- opmental techniques to bypass conventional perspectives, and in so doing raise a pandora’s box of novel ethical questions. even though this scheme does not commence with a conventional embryo, a tran- sient blastocyst with its icm is created (as opposed to a fertilized blas- tocyst). the lack of any potential for survival reflects the decision to stimulate cell differentiation in certain ways, along with the allied deci- sion to refrain from implanting the developing blastocyst in a woman’s uterus. the development being stopped is that of a nuclear-transplant blastocyst, produced with the specific intention of providing tissues to alleviate disease processes in patients. this is an artificially produced blastocyst in an artificial environment, brought into existence specifi- cally to replace damaged tissues and organs in existing human beings. there appears to be a major ethical distinction between this highly spe- cialized type of blastocyst and one generated from egg and sperm. where does this speculation leave us? in approaching (fertilized) embryos, our commitment to them can be at two levels: at a general level, to the population of embryos as a whole, or at a specific level, to individual embryos (jones 1994b). the only realistic commitment is towards early embryos at a general level. individual embryos cannot be

50 d.g. jones equated with individual people, since the chances of individual embryos maturing into adults are relatively small, and early embryos cannot be ‘known’ in the way in which later foetuses and certainly infants and children can be known. the parallelism between embryos and living adults is, therefore, tenuous at best. consequently, our commitment to very early embryos is of a weak variety, although it is not negligible. any research procedures require justification, and should only be under- taken when the priorities accorded to the proposed studies outweigh the ambiguous priorities of early embryos, and when the projected bene- fits to substantial numbers of people outweigh the disadvantages to the early embryonic population. what then of nuclear-transplant blastocysts, produced to serve as the starting-point for tissue production and related research? these repre- sent a step away from fertilized embryos in utero. they are not future members of the human community and were never intended to be so. this does not justify their production, but it does tell us that, once pro- duced, the determining factor becomes the uses to which they are to be put. it might still be objected that we should never embark on projects like these. what is wrong are control and manipulation of this order, since it is these that threaten our human nature by denying human embryos the chance to emerge as members of the human moral com- munity. is there any sense in which we can respect embryos produced specifically for research purposes and therefore for human use? while the notion of respect is usually recognized as elevating status, it remains to be determined whether this characterizes the production of embryos of whatever variety solely as a means to an end. commonalities and disparities between the debates this chapter has covered three separate debates, centred on cadavers, foetuses and embryos, each with its own areas of challenges and ethi- cal quandaries. in attempting to address these three debates within a cohesive whole, it may be that i am muddying the waters rather than www.ebook3000.com

2 dead human bodies and embryos: commonalities … 51 clarifying them. however, they all deal with human tissue and all exist on borders between science and ethics, borders that are far from assured or static. indeed, it is the flexibility of these borders that is one of the common themes. no matter what ethical guidelines are drawn up, they cannot be separated from the current state of the science—the questions raised by the relevant science, the avenues that the scientists would like to pursue and the prospects opened up for medicine and health care more generally. the current debates around the use of foetal material and embryos give the impression that the movement is in only one direction, that is, from the science to the ethics, with the state of the science determining the nature of the ethical constraints imposed by society. however, this has not been the case for cadavers, where ethical consensus has driven legislation and determined what is and is not acceptable. the major dif- ference comes down to the state of the science and the demands of the scientists to explore enticing new territory and address questions for- merly not amenable to scientific analysis. for anatomists using cadav- ers, many of these drivers (although not all of them) were satisfactorily answered many years ago, although the ethical guidelines impose limits that have had a significant impact on the range of procedures under- taken. when these guidelines are abrogated, the detrimental conse- quences are recognized and acted upon (department of health 2000; retained organs commission 2002; hildebrandt 2016). in approaching these issues, i have utilized the notion of the embryo (and foetus) as a ‘proto-cadaver’ (jones 2006). this notion places emphasis on the close relationship that exists between embryos/foetuses and living developed humans, similar to the manner in which cadavers also have a close relationship with living humans (jones and whitaker 2000). hence, human embryos and foetuses have value in the same way as human cadavers do, leading to the stipulation that consent is essen- tial before embryos and foetuses can be used for research or therapeu- tic purposes. but there are differences. unlike adult cadavers, embryos and foetuses do not bring with them memories of what they once were and of how they related to others. instead of memories, those close to embryos and foetuses will have expectations for what they will become or how they will contribute to others: as a new individual, as tissues of therapeutic value, as cells with research possibilities.

52 d.g. jones this is where viewing blastocysts, pre-embryos, embryos and foetuses as proto-cadavers comes to the fore. viewing human embryos and foe- tuses as untouchable sets them apart from all other human tissue. on the other hand, they are also set apart when treated as of less interest than any other human tissue. the dignity and respect accorded human cadavers suggests that dignity and respect should be accorded early human embryos in the laboratory, and foetuses following abortions. treating embryos and foetuses as proto-cadavers does not automati- cally justify all studies carried out on them, but it does allow serious assessment of how best to approach the scientific impetus and clinical imperative implicit in obtaining knowledge of embryonic and foetal development (jones 2006). the advantage of comparing embryos and foetuses in the laboratory to cadavers is that in both cases there is an element of being borderline enti- ties, with distinct human characteristics. they have sufficient human char- acteristics, either actual or potential, to require interested parties to provide informed consent, before they are used for research or teaching purposes. procedures conducted on them are to be undertaken with respect, taking note of the role of altruism and the centrality of giving as opposed to self- interest, and the potential of the therapy or research to usher in significant benefit. inherent within these values is protection of the vulnerable. for instance, the problem in using unclaimed cadavers stems from an abrogation of these values and in so doing places them outside the scope of acceptable ethical practice. this problem crops up in the realm of embryos and foetuses for the same reason, for instance when abortions are carried out in order to obtain tissue for research thereby negating the separation between the two procedures, or when embryos are produced specifically for research purposes. the argument in this chapter has been that the interests of unclaimed bodies cannot be protected, since their prior interests have been neglected. the same does not apply to embryos surplus to the require- ments of a clinical programme, or foetuses resulting from an abortion, since their prior interests can be protected. these comments do not apply to research embryos since they are denied any future interests of their own. in much of the discussion, i have moved from what we know about how to treat cadavers to insights that might be gained for our view of research projects using embryos and foetuses. however, this is not www.ebook3000.com

2 dead human bodies and embryos: commonalities … 53 a one-way path. for instance, the notion of pre-embryo that appeared in the early years of the debate on embryo research was provided with a quasi-scientific rationale in order to lay the foundation for the ethi- cal acceptability of research on embryos up to 14 days post-fertiliza- tion. it will be interesting to see in what ways this may be modified in future debate on a 21-day limit, as opposed to 14-day limit. the tenu- ous nature of the science-ethics link need not have become an object of debate, since there were other ethical grounds for supporting research during this period. this should serve as a salutary reminder for those who make far-reaching claims regarding the post-mortal status of plas- tinates, since there is no evidence that they have transcended their cadaveric status and assumed a different ethical category from that of cadavers. the concept, therefore, appears to be a dubious one. the proto-cadaver designation of embryos and foetuses is a reminder that we are moving in ambiguous territory (hoeyer 2013). this con- cept draws attention to the manner in which we move between scien- tific drivers and ethical imperatives in all these domains, the former seeking to explore new territories and the latter aiming to protect those from whom the human tissue has come or whose potential for future development is being hindered. the ambiguity lies in the borderline character of both the scientific designations and the assurance of the ethical guidelines. both are open to change, both do change, and each influences the other. at these boundaries, plastinated and transformed cadavers, pre-embryos and aborted foetuses can be regarded as proto- cadavers, with much in common and yet with discernible differences. references ali, f., stott, s. r. w., & barker, r. a. (2014). stem cells and the treatment of parkinson’s disease. experimental neurology, 260, 3–11. american medical association (ama). (1994). opinion 2.10—fetal research guidelines, ama code of medical ethics. barker, r. a., barrett, j., mason, s. l., & bjorklund, a. (2013). fetal dopa- minergic transplantation trials and the future of neural grafting in parkinson’s disease. lancet, 12, 84–91.

54 d.g. jones binkley, c., & johnson, c. k. (2015, august 11). medical researchers say fetal tissue remains essential. businessinsider.com. burgess, j. a., & tawia, s. a. (1996). when did you first begin to feel it?— locating the beginning of human consciousness. bioethics, 10, 1–26. charo, r. a. (2015). fetal tissue fallout. nejm, 373, 890–891. consultants to the advisory committee to the director, national institutes of health. (1988). report of the human fetal tissue transplantation research panel. bethesda, md: national institutes of health. dasgupta, n. (2004). studentjama. unclaimed bodies at the anatomy table. jama, 291, 122. deglincerti, a., croft, g. f., pietila, l. n., zernicka-goetz, m., siggia, e. d., & brivanloul, a. h. (2016). self-organization of the in vitro attached human embryo. nature, 533, 251–254. doi:10.1038/nature17948. department of health. (2000). stem cell research: medical progress with responsi- bility. london: department of health. department of health. (2001). the removal, retention and use of human organs and tissue from postmortem examination. london: her majesty’s stationary office. desmond, j. (2010). postmortem exhibitions: taxidermied animals and plas- tinated corpses in the theaters of the dead. configurations, 16(3), 347–378. fischer, u. (2000). when death goes on display. in g. von hagens & a. whalley (eds.), anatomy art—fascination beneath the surface (pp. 233– 237). heidelberg: institute for plastination. gertler, g. b. (1986). brain birth: a proposal for defining when a fetus is enti- tled to human life status. southern californian law review, 59, 1061–1078. greely, h. t., hamm, t., johnson, r., price, c. r., weingarten, r., & raffin, t. (1989). the ethical use of human fetal tissue in medicine. nejm, 320, 1093–1096. gunderman, r. b. (2008). giving ourselves: the ethics of anatomical dona- tion. sciences education, 1, 217–219. hildebrandt, s. (2016). the anatomy of murder. new york: berghahn books. hoeyer, k. (2013). exchanging human bodily material: rethinking bodies and markets. dordrecht: springer. holt, n. (2015, july 30). the case for fetal-cell research. the new york times. retrieved september 9, 2015, from http://www.nytimes.com/2015/07/30/ opinion/the-case-for-fetal-cell-research.html?_r=1. human fertilisation and embryology authority (hfea). (2012). what is sperm, egg and embryo donation? retrieved january 28, 2016, from http:// www.hfea.gov.uk/sperm-egg-embryo-donation.html. www.ebook3000.com

2 dead human bodies and embryos: commonalities … 55 hyun, i., wilkerson, a., & johnston, j. (2016). embryology policy: revisit the 14-day rule. nature, 533, 169–171. institute for plastination. (2008). booklet: donating your body for plastination. heidelberg: body donation office, institute for plastination. international federation of associations of anatomists (ifaa). (2012). recommendations of good practice for the donation and study of human bodies and tissues for anatomical examination. retrieved april 1, 2016, from http://www.ifaa.net/index.php/data/ifaa%20guidelines%20220811.pdf. jones, d. g. (1991). fetal neural transplantation: placing the ethical debate within the context of society’s use of human material. bioethics, 5, 23–43. jones, d. g. (1994a). the human embryo: between oblivion and meaningful life. science and christian belief, 6, 3–19. jones, d. g. (1994b). use of bequeathed and unclaimed bodies in the dissect- ing room. clinical anatomy, 7, 102–107. jones, d. g. (1998). the problematic symmetry between brain birth and brain death. journal of medical ethics, 24, 237–242. jones, d. g. (2002). the use of human tissue: an insider’s view. new zealand bioethics journal, 3(2), 8–12. jones, d. g. (2005). christian responses to challenging developments in biomedical science: the case of in vitro fertilization (ivf). science and christian belief, 26, 143–164. jones, d. g. (2006). the human embryo: its ambiguous nature. in m. jeeves (ed.), human nature (pp. 25–40). edinburgh: royal society of edinburgh. jones, d. g. (2016). the public display of plastinates as a challenge to the integrity of anatomy. clinical anatomy, 29, 46–54. jones, d. g., & telfer, b. (1995). before i was an embryo, i was a pre-embryo: or was i? bioethics, 9, 32–49. jones, d. g., & whitaker, m. i. (2000). engaging with plastination and the bodyworlds phenomenon: a cultural and intellectual challenge for anato- mists. clinical anatomy, 22, 770–776. jones, d. g., & whitaker, m. i. (2009). speaking for the dead: the human body in biology and medicine (2nd ed.). farnham: ashgate. jones, d. g., & whitaker, m. i. (2012). anatomy’s use of unclaimed bod- ies: reasons against continued dependence on an ethically dubious practice. clinical anatomy, 25, 246–254. king, m. r., whitaker, m. i., & jones, d. g. (2014). i see dead people: insights from the humanities into the nature of plastinated cadavers. journal of medical humanities, 35, 361–376.

56 d.g. jones lee, t. s., schmainda, k. m., & feeney, m. b. et al. (2015). use of fetal is unethical and unnecessary. milwaukee wisconsin journal tissue sentinel. retrieved november 17, 2015, from http://www.jsonline. com/news/opinion/use-of-fetal-tissue-is-unethical-and-unnecessary- b99572742z1-326513781.html. linke, u. (2005). touching the corpse: the unmaking of memory in the body museum. anthropology today, 12, 13–19. lizama, n. (2009). afterlife, but not as we know it: melancholy, postbiologi- cal ontology, and plastinated bodies. in t. c. jespersen, a. rodrıguez, & j. starr (eds.), the anatomy of body worlds: critical essays on the plastinated cadavers of gunther von hagens (pp. 16–28). jefferson, nc: mcfarland. macdonald, h. (2010). possessing the dead. melbourne: melbourne university press. mahowald, m. b., silver, j., & ratcheson, r. a. (1987). the ethical options in transplanting fetal tissue. hastings center report, 17(1), 9–15. may, w. f. (1985). religious justification for donating body parts. hastings center report, 17, 38–42. mcgee, g., & caplan, a. l. (1999). what’s in the dish? hastings center report, 29, 36–38. mchanwell, s., brenner, e., chirculescu, a. r. m., drukker, j., van mameren, j. h., mazzotti, g., et al. (2008). the legal and ethical frame- work governing body donation in europe—a review of current practice and recommendations for good practice. european journal of anatomy, 12, 1–24. mclaren, a. (1984). where to draw the line? proceedings of the royal institution, great britain, 56, 101–121. mclaren, a. (1986). prelude to embryogenesis. in ciba foundation, human embryo research: yes or no? (pp. 5–23) london: tavistock publications. moore, c. m., & brown, c. m. (2004). gunther von hagens and body worlds part 2: the anatomist as priest and prophet. the anatomical record (part b: the new anatomist), 277b, 14–20. national commission for the protection of human subjects of biomedical and behavioral research. (1975). research on the fetus. washington dc: us department of health, education and welfare (dhew). national health and medical research council (nhmrc). (1984). ethics in medical research involving the human fetus and human fetal tissue. medical journal of australia, may 12, 610–620. nuffield council on bioethics. (2000). stem cell therapy: the ethical issues. london: nuffield council on bioethics. www.ebook3000.com

2 dead human bodies and embryos: commonalities … 57 peel committee report. (1972). the use of fetuses and fetal material for research. london: her majesty’s stationery office. preuss, d. (2008). body worlds: looking back and looking ahead. annals of anatomy, 190, 23–32. prnewswire. (2006). anatomist dr. gunther von hagens reiterates his mission of public health education to press corps in guben, germany, november 30. retrieved september 20, 2010, from www.prnewswire. co.uk/cgi/news/release?id5185453. rae, s. b. (1991). spare parts from the unborn? the ethics of fetal tissue transplan- tation. christian research journal, fall 1991, retrieved september 19, 2015, from http://www.equip.org/article/the-ethics-of-fetal-tissue-transplantation/. retained organs commission. (2002). a consultation document on unclaimed and unidentifiable organs and tissue, a possible regulatory framework. london: national health service. richardson, r. (2001). death, dissection and the destitute (2nd ed.). london: phoenix press. riederer, b. m. (2014). plastination and its importance in teaching anat- omy. critical points for long-term preservation of human tissue. journal of anatomy, 224, 309–315. riederer, b. m. (2016). body donations today and tomorrow: what is best practice and why? clinical anatomy, 29, 11–18. riederer, b. m., bolt, s., brenner josé, e., bueno-lópez, l., circulescu, a. r. m., davies, d. c., et al. (2012). the legal and ethical framework governing body donation in europe—1st update on current practice. european journal of anatomy, 16, 1–21. rossant, j. (2016). implantation barrier overcome. nature, 533, 182–183. servick, k. (2015). in wisconsin, an early clash over fetal tissue. science, 349, 1267–1268. shahbazi, m. n., jedrusik, a., vuoristo, s., recher, g., hupalowska, a., bolton, v. et al. (2016). self-organization of the human embryos in the absence of maternal tissues. nature cell biology. http://dx.doi.org/10.1038/ ncb3347. skulstad, k. (2006). body worlds draws large crowds and controversy. from www.canadianchristianity.com/cgi-bin/ retrieved july 4, 2008, bc.cgi?bc/bccn/1106/18body. sladek, j. r., & shoulson, i. (1988). neural transplantation: a call for patience rather than patients. science, 240, 1386–1388.

58 d.g. jones stern, m. (2006). dystopian anxieties versus utopian ideals: medicine from frankenstein to the visible human project and body worlds. science as culture, 15, 61–84. strong, c. (1991). fetal tissue transplantation: can it be morally insulated from abortion? journal of medical ethics, 17, 70–76. takahashi, k., tanabe, k., ohnuki, m., narita, m., ichisaka, t., tomoda, k., et al. (2007). induction of pluripotent stem cells from adult human fibro- blasts by defined factors. cell, 131, 861–872. taussig, k.-s., hoeyer, k., & helmreich, s. (2013). the anthropology of potentiality in medicine. current anthropology, 54, s3–s14. van dijck, j. (2001). bodyworlds: the art of plastinated cadavers. configurations, 9(1), 99–126. vawter, w., kearney, w., gervais, k. g., caplan, a. l., garry, d., & tauer, c. (1990). the use of human fetal tissue: scientific, ethical and policy concerns. winnipeg, mn: university of manitoba. von hagens, g. (1979). impregnation of soft biological specimens with ther- mosetting resins and elastomers. the anatomical record, 194(2), 247–256. von hagens, g. (2001). gruselleichen, gestaltplastinate und bestattungszwang (on gruesome corpses, gestalt plastinates and manda- tory interment). in f. j. wetz & b. tag (eds.), sch€one neue korperwelten: der streit um die austellung (brave new body worlds—the question of the exhibition) (pp. 260–282). stuttgart: klett-cotta. von hagens, g., & whalley, a. (eds.). (2000). anatomy art: fascination beneath the surface: catalogue on the exhibition. heidelberg: institute for plastination. walters, l. (1975). ethical and public policy issues in fetal research. in the national commission for the protection of human subjects of biomedical and behavioral research, appendix: research on the fetus. washington, dc: us department of health, education and welfare (dhew). warnock, m. (1985). a question of life. oxford: blackwell. warnock committee report. (1984). report of the committee of inquiry in human fertilisation and embryology. london: her majesty’s stationary office (hmso). wilmut, i., schneike, a. e., mcwhir, j., kind, a. j., & campbell, k. h. (1997). viable offspring derived from fetal and adult mammalian cells. nature, 385, 810–813. www.ebook3000.com

3 the immortal life of ethics? the alienation of body tissue, ethics and the informed consent procedure within induced pluripotent stem cell research casimir macgregor, tristan mccaughey, megan munsie, alice pébay and alex hewitt when people ask – i say, yeah, that’s right, my mother [ ’s] name was henrietta lacks, she died in 1951, johns hopkins took her cells and them cells are still living today, still multiplying, still growin and spreadin if you don’t keep em frozen. science calls her hela… but i always thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors? don’t make no sense. people got rich off my mother without us even knowin about them taking her cells, now we don’t get a dime. deborah, daughter of henrietta lacks (skloot 2010: 9) c. macgregor (*) · t. mccaughey monash university, melbourne, australia e-mail: casimir.macgregor@gmail.com m. munsie · a. pébay university of melbourne, melbourne, australia a. hewitt menzies institute of medical research, university of tasmania, tasmania, australia © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_3 61 www.ebook3000.com

62 c. macgregor et al. the case of henrietta lacks, and the hela cell line, embodied the new pos- sibilities of biomedical research in the post-world war two era (landecker 2007: 140). the story of henrietta lacks and the creation of hela line has been retold countless times: the young women who eight months after a biopsy was diagnosed with a malignant tumour on her cervix and dies, but her cells live on (landecker 2007: 141). the immortality of the hela line is deeply tied to the personification of the cell. but what is often left behind in retellings of the hela story are its implications for new cell technolo- gies, such as induced pluripotent stem cells (ipsc). the case of henrietta lacks is a cautionary tale about the consequences when biomedical research negates ethics and informed consent procedures, and the often unequal power relationship between researchers and research participants. it may be unfair to judge the researchers who created hela in the 1950s retrospec- tively. yet, in the aftermath of world war two, especially the nazi atrocities in europe and the war crimes committed by the imperial japanese army’s unit 731 (gold 2011), an ethical duty to research participants has become a cornerstone of research and is embodied in documents, such as the declaration of helsinki – ethical principles for medical research involving human subjects (wma 2001). however, despite such declarations, there are ongoing concerns about the ethics of informed consent with respect to biomedical research. it is essential that biomedical research participants are fully informed about what will happen to them during the research pro- cess—in particular, what collected tissue will be used for. to date, there has been little research that examines the research process and participant atti- tudes towards the donation of biological material for human ipsc research (dasgupta et al. 2014; mccaughey et al. 2016a, b). this chapter is an attempt to fill this gap in the literature. it seeks to examine issues unique to ipsc research and to provide a framework, in order to help improve ethics and consent procedures to ensure research participants can make an informed choice to participate in the research. pluripotent stem cells are defined by two main characteristics: one, the ability and capacity for prolonged self-renewal akin to immortalisa- tion; two, their pluripotency, meaning they are capable of turning into any cell type of the human body (takahashi et al. 2007; thomson et al. 2008). human embryonic stem cells (hescs) are perhaps the mostly widely known, due to their ethically controversial isolation that requires

3 the immortal life of ethics? the alienation of body tissue … 63 the destruction of an embryo (holland et al. 2001). however, since 2007 a new source of human pluripotent stem cells has become prominent in research—ipsc. induced pluripotent stem cells (ipscs) arise from adult somatic cells, such as a skin cell, that are genetically reprogrammed into pluripotent cells (takahashi et al. 2007; yu et al. 2007). nucleofection (an electroporation based method) has become the most common way to introduce the reprogramming factors into adult cells (si-tayeb et al. 2010). although additional research is needed, ipsc research has created new avenues for human disease modelling and therapy. it is hoped by clinicians and scientists alike that ipscs will help lead to the develop- ment of new therapies (kim 2014). since the development of ipscs, they have been promoted widely, particularly in media coverage, as an ethical alternative to hesc (cyranoski 2008). nonetheless, unique eth- ical issues arise from the use of ipscs, including the creation of new life forms, such as gametes, that could have potential to develop into an embryo (karpin 2006) and other previously unforeseen ethical issues such as personalised medicine (tutton 2014). although some person- alised medicines are marketed towards personalised benefit, at their heart, they seek to differentiate ‘human beings according to known or putative genotypes and their statistical association with certain states of being’ (tutton 2014: 162). given that ipscs can be generated directly from adult tissue, many of the contentious issues associated with human embryonic samples are avoided. however, they present their own unique ethical issues, therefore a comprehensive informed consent process is crucial to ensure participants of ipsc research fully under- stand both the broad and specific implications of their involvement. the ipsc research study our interest in ipsc research was underpinned by the pressing clinical need to better understand eye disease. given the difficulty in directly interrogating ocular cells from living patients, ipsc technology offers a revolutionary means by which disease-processes can be studied in people with various eye diseases. for example, using current ipsc technology, it is now possible to take an adult cell (such as a skin cell), turn it into www.ebook3000.com

64 c. macgregor et al. an ipsc, and then generate different tissue from that stem cell, such as the nerve or retinal tissues at the back of the eye. this breakthrough has been revolutionary, as it is now possible to study the cells at the back of the eye without needing to take a sample from the eye itself. by com- paring how the cells from people with different eye conditions (or dif- fering risks of eye disease) vary to those from people with healthy eyes, the research team aimed to identify important gene pathways involved in disease development and to explore avenues for new treatments. through collaborative work, we collected an extensive number of tissue samples from patients with a variety of blinding ocular diseases, as well as their relatives and healthy controls (people who have healthy eyes and no known family history of an eye condition). through the tissue donation research, a number of ethical issues particular to the generation and study of ipsc became evident to researchers, in particu- lar an understanding about stem cells amongst participants. there was concern about whether participants fully understood that ipscs derived from their tissue would not be destroyed, that cells or derivatives from their sample could be injected into animals and that ipscs generated from the tissue could be shared with other researchers (with appropri- ate confidentiality protections and human research ethics committee approvals). the team considered these issues important to the function- ing of the research and felt they had an ethical duty to examine the information that research participants could or could not understand and to pinpoint more accurately any ethical issues in the informed con- sent procedure. this chapter describes this process. first, we outline the ethical issues concerning ipsc research, and the ways in which these issues are rel- evant to informed consent. second, in order to identify potential ethi- cal or communication issues that may result in research participants not being fully informed, we discuss the ability of research participants to recall information about ethics and informed consent procedures in the tissue donation study. third, we outline the methods that were trialled with the research participants, which sought to help improve informed consent. we focused on comparing three different methods within the ethical and informed consent procedure: the standard method, the use

3 the immortal life of ethics? the alienation of body tissue … 65 of a video animation and an interactive consent method which com- bined two of the previous methods. in this chapter, we suggest that for innovative technologies, such as ipsc, there is a great need for research- ers to take particular care in communicating the aims, goals and meth- ods of the research, so that research participants are able to make a fully informed choice. this is especially important for participants in ipsc research, as ipsc lines derived from their tissue have the capacity for prolonged self-renewal akin to immortalisation and may effectively out- live the original donor and be widely distributed to researchers seeking to help future generations. thus, it is vital to develop a refined consent process, not only for biomedical research, but for scientific research more generally, that outlines both current applications and potential future uses of a participant’s biological tissue and ensures appropriate ethical collection and informed consent. issues of ethics and informed consent in ipsc research throughout medical history there have been a number of cases where biomedical research has exploited people and their consent, such as the experiments conducted by ernst rüdin and josef mengele during the nazi regime in germany (seidelman 1988); the covert biological and chemical warfare research undertaken in china by the imperial japanese army’s unit 731 (nie 2002) and the tuskegee syphilis controversy in the usa (jones 1993). since, world war two, the declaration of helsinki: ethical principles for medical research involving human subjects has mandated that study participants, or their legal guard- ians, must be adequately informed of all relevant information prior to provision of their tissue sample through the process of informed con- sent (sims 2010; wma 2001). there are several ethical issues that are important to consider within ipsc research: the immortalisation of cell lines, withdrawal of consent, the sharing of cell lines, animal research, participant benefit and the communication of relevant information to obtain informed consent. www.ebook3000.com

66 c. macgregor et al. immortalisation of cell lines there are a number of ethical challenges related to the immortalisation of ipscs. a central question that cell immortalisation raises is whether adequate informed consent be obtained if neither researchers nor study participants are aware of future uses of the samples. this creates an ethi- cal and legal dilemma for consent in ipsc research. a suggested solu- tion to this issue is to gain consent from participants for specific studies and applications that are known at the present time, and regain consent if future uses arise (thomas scott et al. 2012). however, this approach may be labour-intensive, present time limitations and create discom- fort for research participants who do not wish to be contacted by the research team. regaining consent also presents many practical issues that may make re-establishing contact difficult. for example, tissue donors may have moved away from their last known contact address, or may have since died. additionally, due to factors such as funding limita- tions and transient research staff, making or re-gaining contact can be an inefficient, expensive and futile exercise. an alternative approach is a single consultation consent model, in which research participants are given as much information as is currently available, informed by hypothetical uses of the ipscs, and asked to pro- vide a broad consent (wendler 2006). this model of consent relies on a high degree of trust between research participants and researchers. it has been shown that the majority of participants are comfortable with this one interaction approach to consent (thomas scott et al. 2012; wendler 2006). however, dasgupta et al. (2014) found that participants expressed concerns about this model of consent. participants in their study brought up the example of henrietta lacks and the creation of the hela cell line. participants were ‘worried’ whether researchers would adhere to the terms of the signed consent forms, and voiced concerns about the potential for the commercialisation of their cell lines, which would be at odds with the sentiment of altruistic donations (dasgupta et al. 2014). currently, the international society for stem cell research (isscr) have guidelines for stem cell research and clinical translation, which outline core principles and best practices for research, to help ensure confidence and integrity in stem cell research (daley et al. 2016). however, there is uncertainty about whether these guidelines have been widely adopted.

3 the immortal life of ethics? the alienation of body tissue … 67 withdrawal of consent the right to withdraw consent is a cornerstone within contempo- rary approaches to research ethics and is a particular feature of the declaration of helsinki (wma 2001). there are a number of avenues for withdrawal of consent. participants can request a cessation of con- tact with the research team under an ongoing contact model, which can mean the destruction of sample identifiers of the original specimen, ceasing distribution of any materials, and even complete destruction of their sample. however, with ipscs, withdrawal may not be possi- ble because cell lines may have been produced and research may have been undertaken using these lines, which may have been shared with other laboratories (sugarman 2008). other issues remain: do ipscs derived from tissues samples still constitute the participant’s own tissue? (lowenthal et al. 2012). there are those who argue that once an ipsc line is derived from a participant’s cell it is no longer theirs, and instead becomes the intellectual property of the university or biotechnology company. therefore, the limitations around withdrawing the cell line, and the kinds of procedures this would entail, need to be clearly out- lined in the consent process to satisfy the criteria of informed consent (dasgupta et al. 2014). sharing of cell lines each ipsc line is unique and possesses different characteristics and morphology. consequently, some cell lines will be more suitable for certain research than others, and the sharing of ipsc lines between researchers and laboratories may be necessary to enable replication and ongoing progress in research. the international charter of principles for sharing bio-specimens and data, compiled by mascalzoni et al. (2015), suggests that an exception to consent allows existing biological materi- als to be shared for research if they are de-identified. however, this pre- sents a number of ethical problems that are unique to ipsc research, as other forms of donation, such as tissue, blood and body parts are given without restrictions on use. as ipscs are virtually genetically identical www.ebook3000.com

68 c. macgregor et al. to their donor cells, can exchanged ipsc lines ever be completely anonymous? (takahashi et al. 2007). furthermore, if researchers share cell lines with other researchers, it may be impossible to guarantee to research participants that their cells will not be used in research the par- ticipant may personally object to (lowenthal et al. 2012). this is an area where researchers can be proactive and inform their research participants that their ipsc lines could be shared, and reas- sured that their samples will only be used in projects approved by rel- evant ethics committees (lowenthal et al. 2012; aalto-setälä et al. 2009). furthermore, although the tissue sample and ipsc line will have the participant’s genetic sequence, it could also be appropriate to inform participants that their sample will remain anonymous to other researchers. this means that the sample would have no unique identi- fier attached, such as name, date of birth or other personal information (lomax et al. 2013, 2015). however, as previously mentioned, the par- ticipant’s dna could betray the participant’s identity (gymrek et al. 2013). the importance of sharing samples amongst researchers, com- bined with the difficulty of ensuring restrictions placed by participants on their own tissues, is another reason to encourage a consent process which covers all potential future uses of ipscs. animal research the use of animals in scientific research has been greatly contested in recent years. many people cannot accept the need for some animal research, as views diverge sharply on whether animal experimentation results in medical advances for humans, whether the exploitation of ani- mals is ‘good’ science or whether the testing done on animals could be achieved by other means (matthews 2008; savage 2001). to date ani- mals are a central part of ipsc research. one of the most common uses for animals in research is when ipscs are injected into mice to observe the formation of a human cell-derived tumour (muller et al. 2010). consequently, all consent recommendations for ipscs require specifi- cation of any animal involvement. research on animals remain a cru- cial aspect of ipsc research and will be a critical part in the pre-clinical

3 the immortal life of ethics? the alienation of body tissue … 69 stage of many trials: therefore, it is necessary to raise this issue during the ethics and informed consent procedure. participant benefit from the literature, we can observe that the underlying motivation for research participants to be involved in ipsc research is mainly altruis- tic, such as the desire to assist in the development of cures for debilitat- ing diseases (dasgupta et al. 2014). however, the translation of science into therapies poses two main problems for research participants. first, while participants may hope they will benefit from therapies that may develop from the research, it is important that researchers inform par- ticipants that the development of new clinical therapies can take dec- ades, if it happens at all. second, it is important that researchers inform participants of any financial and propriety interests, such as whether the research may lead to testing or treatments that become the property of private companies or organisations. it is also important to inform par- ticipants that they would not receive financial compensation or have a right to the testing, treatments or property developed from the research, unless otherwise stated and agreed to by the research participant. edwards et al. (1998) suggest that self-interest was a key motivation for participants to enrol in a clinical trial. as the authors point out, self- interest is a somewhat strange motivation, as participants are unlikely to prospectively gain anything from their participation due to the time lag in translational pathways from bench to bedside (edwards et al. 1998). within our study, participants framed their participation as ‘altruistic’, but hoped to gain from the ipsc research in the future. this suggests that participants’ motivation for participating in research falls along a continuum between altruism and self-interest. there have been several controversies recently that demonstrate a systematic lack of clear communication between researchers, partici- pants and the propriety rights and ownership of samples and research derived from these samples. one of the most well-known cases in recent years was that of the alaskan engineer john moore, who filed a lawsuit against a physician who created an immortal cell line from www.ebook3000.com

70 c. macgregor et al. some of his tissue. john moore sought a share of any profits that were created from a cell line made from his donated tissues. however, a court later ruled that john moore held no property right to his cells (waldby and mitchell 2006). another example from the usa concerns the native american tribe the havasupai, who sued arizona state university after researchers took samples from the tribe, which were donated for diabetes research, and used them without consent to study mental illness and geographical migration studies (harmon 2010). the legal battle between the havasupai and arizona state university was settled out of court, but the case highlighted that the rights of research participants can be violated when they are not fully informed about how their dna might be used (harmon 2010). these cases highlight the fact that research participants have a desire to know how their tis- sues are used. as was made apparent by the john moore case, research- ers should make clear to participants the proprietary rights of their tissue sample. conveying information despite the best efforts of researchers, it has been well established that patients retain only a small portion of the information and may also have limited understanding of what they are consenting to during the ethics and informed consent procedures (li et al. 2014). the standard method of obtaining informed consent is through verbal or written consent. however, there is a greater need to ensure participants are ade- quately informed about innovative technology, such as ipsc research. therefore, there is a growing need to explore and experiment with other ways to provide information and gain the informed consent of research participants. one method that been explored recently has been the use of multimedia to assist with gaining informed consent. although videos are not a common component of ethics and informed consent procedures, a number of studies have explored their use to improve participants’ consent recall. the results of these studies

3 the immortal life of ethics? the alienation of body tissue … 71 have been mixed, with some studies showing only slight improve- ment in recall with the addition of a video (hoffner et al. 2012; sonne et al. 2013) while others have shown significant improvement (shukla et al. 2012; tait et al. 2009). in their cochrane review, synnot et al. (2014) examined the use of multimedia informed consent procedures and found that they did not indicate strong evidence for or against the use of multimedia to enhance informed consent. despite this, synnot et al. (2014) have found that irrespective of improved understanding, research participants responded positively to the administration of a video, and felt more informed after viewing it, even if this was assessed not be the case (see also sonne et al. 2013). it is difficult to assess the effectiveness of the use of video within informed consent procedures, as the quality of the video is often an unknown. therefore, the understanding of informed consent may be a reflection of the quality of the video, such as a poor script or produc- tion values, rather than the efficacy of the medium itself. this is per- haps the reason that the literature is inconclusive on the effectiveness of video consent. however, it is important to note that the use of video or an interactive informed consent process has not been shown to have an adverse reaction on research participants (synnot et al. 2014). the significant disadvantage of video informed consent procedures has been the cost and difficulty of creating the video. in this section we have outlined some specific ethical issues that are important to acknowledge when engaging in ipsc research. to date, there is no literature suggesting the best method of creating a video to administer ethics and consent procedures, and there appears to be little work done on exploring research participant understanding and recall of ethical issues following informed consent. while the lit- erature on the use of videos in consent is mixed, a number of ethical issues, such as the difficulty in conveying complex scientific informa- tion, may mean that video consent could be an effective method to improve informed consent in innovative areas of science such as ipsc research. www.ebook3000.com

72 c. macgregor et al. recall of ethics and informed consent in a study on ipscs while informed consent guidelines for ipsc research have been estab- lished, the need remains to determine the effectiveness of current mod- els and procedures, in order to make sure that research participants make an informed choice (dagusta et al. 2014). previous research has shown that understanding and recall of consent procedures and infor- mation is generally poor amongst study participants (khan et al. 2014; tam et al. 2015). our research team has been involved in the collection of tissue samples from participants, which will be turned into ipscs for research into eye diseases. we sought to examine whether there was an issue to do with participant recall of ethics and informed consent pro- cedures and to gain knowledge of the participants’ understanding of ipsc research. furthermore, we sought to determine what demographic and personal factors affected recall of information and consent. in order to give information-recall some context, we also sought to examine research participant’s motivation for taking part in the ipsc research project and their perception of stem cell technologies. recall of informed consent research participants donating a tissue sample were provided with a project information sheet that outlined the subject and significance of the research. participants were also given a written consent form to sign and a revocation of consent form on the day of their collection. prior to the tissue sample collection, participants were verbally informed of the purpose of the study by one of two investigators responsible for the tis- sue collection. participants were also asked whether they had any ques- tions about the research or their tissue sample. in order to gain insight into the research participants’ recall about informed consent, their motivations for participating in the research and their perception of stem cell technologies, a 35-item questionnaire was designed. our questionnaire sought to record the demographic

3 the immortal life of ethics? the alienation of body tissue … 73 information of the participant; to assess participants’ personal invest- ment in the research; to establish whether they or a family member was affected with a disease relevant to the research; and, specifically, to ask participants about the tissue collection study’s consent process. participants were also asked to record the time elapsed since their tis- sue donation and were asked to provide details of existing knowledge or sources of supplementary information accessed outside of the infor- mation provided by the research team. the final sections of the ques- tionnaire were designed to gain an understanding of the participants’ knowledge of basic stem cell properties, recall of the consent procedure and their personal attitudes towards aspects of ipsc research. ten likert questions were used to assess whether participants agreed with particu- lar statements, and ten separate true or false questions were also asked. participants who had previously provided tissue samples for this ipsc research were sent the questionnaire by email or by hard copy to their last known postal address, or emailed a copy after a non-response of two weeks. understanding of consent information was gauged by results from 13 questions in the last two sections of the questionnaire. for the final section’s dependent variables, we collapsed the five-point likert scale to a three-point scale (‘disagree’, ‘neutral’, ‘agree’) merging the ‘strongly agree’ and ‘agree’ options and the ‘strongly disagree’ and ‘disagree’ options. responses were then labelled as ‘correct’ or ‘incorrect’ depend- ing on the appropriate answer to each question. ‘unsure’ and ‘i don’t know’ answers were grouped in the ‘incorrect’ category. data were processed using statistical package for the social sciences, ibm (ver- sion 23.0; spss inc., chicago, il, usa). associations between con- sent recall and predictor variables such as time since consent, level of education, family history of genetic disease, previous work in health sciences field, perceived understanding of consent and accessing addi- tional sources of information about the study were calculated using the pearson chi-squared test. attitudes towards applications of stem cell research were compared to variables such as religious affiliation and family history of genetic disease. results were considered significant at p < 0.05. www.ebook3000.com

74 c. macgregor et al. results of the recall of informed consent a total of 234 questionnaires were distributed, with 153 (65.4%) responses received. the median duration between sample dona- tion and follow-up questioning was 313 days (range 10–573 days), while the self-reported median time since biopsy was 365 days (range 10–1095 days). a great number of participants (103 or 73.0%) did not access any additional information about ipsc prior to involvement with this study, and 123 (88.5%) people reported feeling a high degree of trust in the research team. when questioned about the most useful source of information, over half the participants (80 or 57.6%) felt that the research team on the day of collection was the best source for infor- mation. only 55 (39.6%) reported that the information sheet was most beneficial. one hundred and fifteen (81.6%) participants stated that they had read the entire information pamphlet at least once. a total of 132 (93.6%) of participants reported that they felt ade- quately informed following the consent process. there was also a high degree of trust established between the participant and the research team as 136 (97.8%) participants felt able to ask questions during the consent process. a large proportion (129, 91.5%) of study participants believed they understood what was meant by ‘stem cell’. however, there was low recall about information relating to the fate of the stem cells that would be created from the tissue sample. only 22 (16.1%) and 71 (51.8%) people knew that their sample could be maintained indefi- nitely or be differentiated into any other cell in the adult body. interestingly, a participant’s level of education, knowledge of medical science or personal investment did not appear to influence the number of correct responses (p > 0.05). notably, the time since tissue biopsy did not influence consent recall or understanding about stem cell biology. a total of 104 (75.9%) respondents were aware that their samples would be used to create new treatments and tests, but only 41 (29.9%) appre- ciated that pharmaceutical companies could be involved in this process. some information that was clearly stated on the participant’s informa- tion and consent form, such as the use of animals in scientific experi- ments, received a very low recall rate 25 (18.2%).

3 the immortal life of ethics? the alienation of body tissue … 75 our study participants possessed a strong commitment to contribute to medical research, with 79 (92.9%) of respondents stating that this commitment was the main reason for their participation. this altruistic commitment to medical research was also recognised, and 118 (84.9%) participants who stated they personally did not expect to financially benefit from any discoveries derived from their tissues or ipsc derived from them. however, 66 (47.5%) participants reported that they were hoping to personally benefit from the study, in the sense of improved medicines or treatments. being personally affected by an inherited dis- ease did not appear to significantly influence participant support of human embryonic stem cell research (p = 0.26) or reproductive cloning (p = 0.65). almost all research participants strongly supported stem cell science, with 99.3% strongly supporting cellular therapy using stem cells and 113 (90.4%) supporting the use of donated excess ivf human embryos in research. however, despite the strong support for stem cell science, subgroup analysis confirmed that catholicism was associated with decreased support for human embryonic stem cell research (p = 0.005). exploring informed consent participants from our study into the recall of informed consent strongly supported stem cell science. however, there were several instances where important information about what would happen to the tissue samples, and the ipsc derived from them, was not accurately recalled by the majority of participants. although donation consent was not unimportant to participants, they failed to recall important issues surrounding consent. interestingly, poor recall of ethics and consent procedures has been widely found in medical research (khan et al. 2014; tam et al. 2015). within the lit- erature, many explanations have been given as to why recall of ethics and informed consent procedures is poor. some studies have suggested that consent recall decreases with time (lavelle-jones 1993). therefore, it is argued that poor understanding of ethics and informed consent procedures can partly be explained in terms of this time lapse between www.ebook3000.com

76 c. macgregor et al. research participation and the follow-up study asking about ethics and informed consent procedures. however, within our own study, length of time did not appear to be a key factor, as research participants who donated their tissue within six months of the follow-up study did not appear to have a significantly greater recall or understanding of ethics and informed consent procedures. given the potentially immortal life of the ipsc line derived from tissue samples, it is therefore critical that recall of consent is not lost so quickly. another core issue to emerge from our data was the gap between the perceived and actual understanding of the information about the ipscs provided during the information and consent procedure. interestingly, participants generally overestimated their knowledge regarding stem cells. other studies have reported a similar disconnect between per- ceived and actual understanding within ethics and informed consent procedures (sepucha et al. 2010). sepucha et al. (2010) suggest that trust was an important factor in facilitating a research participant’s level of understanding. as noted earlier, our research participants expressed great trust in the information given by the research team. despite this trust, participants did not ask any questions that explored important ethical issues or concerns about their consent. some studies have sug- gested that formalised tests to assess a research participant’s comprehen- sion of ethics and informed consent procedures could help to improve understanding (buccini 2009; ryan et al. 2008). after examining our research participants’ recall of the ethics and informed consent procedures, there are three limitations that need to be noted. the first is that our research population was similar in terms of ethnicity, socio-economic status, education and religious beliefs. the research sample had a mean age of 65 years (27-89 range), 43.3% were female, 64.5% had a religious affiliation, with christianity being the most dominant religion—roman catholic (39%), and then protestant (7.8%). 36.9% of participants were tertiary educated, with 14.9% hav- ing a background in health or medicine. therefore, a sample with more diverse ethnic, cultural and religious beliefs may have created a dif- ferent result. the second concerns the relative novelty of ipscs as an innovative scientific tool. ipscs may not be widely known to the gen- eral public beyond short sound bites within the mainstream media, so

3 the immortal life of ethics? the alienation of body tissue … 77 participants in our study relied heavily on the information given as part of the research project to inform them about the issue. we also found that the majority of research participants did not access any information beyond what was provided during the information and consent process. this underscores the importance of detailed and impartial informa- tion about the science and how clinical benefit is communicated to the public within research ethics and informed consent procedures. a third and final issue concerns recall bias. as our ethical and informed consent recall study was retrospective in nature, recall bias may have been intro- duced. although our study research population will not be representa- tive of all ipsc research participants, we would argue that our results would be representative of similar large-scale ipsc projects. despite our study’s ethics and informed consent procedures being formalised from published guidelines (dagusta et al. 2014; aalto-setälä et al. 2009), our results suggest that certain issues about consent were not well understood by participants. as stem cell science often attracts great expectations in patients, it is important for researchers to ensure that participants are making an informed choice to participate in the research. our research also suggests that new methods are required to help enhance the communication of information and help inform research participants in a manner that helps to facilitate greater recall of ethics and informed consent procedures. it is to this issue we now turn. improving informed consent to date, a number of methods have been attempted in order to help improve informed consent and outline information for research partic- ipants. a number of innovative techniques have been trialled to help enhance informed consent communication and understanding, in addition to standard verbal and written consent procedures, in order to ensure participants are sufficiently informed. one such method has been the use of audio-visual aids, whereby research, ethics and con- sent information is conveyed using video/digital based technology. within the literature there are mixed reports about the effectiveness of the use of video and animation regarding the research consent process www.ebook3000.com

78 c. macgregor et al. (bollschweiler et al. 2008; ryan et al. 2008; synnot et al. 2014). the information provided must be communicated in a clear and non-spe- cialised way to the public, which may represent a challenge for research- ers. another method has been the use of comprehension tests to ensure that participants have a comprehensive understanding of the informa- tion and consent requirements, but these have not been widespread (buccini 2009). however, comprehension tests have been shown to help identify gaps in participants’ knowledge, identify questions for partici- pants and also improve consent understanding (buccini 2009). the lead researchers in the team sought an innovative method to make informed consent an interactive process. in order to gain an understanding of the validity of an interactive consent process, research participants in the tissue donation study were assigned to three groups with different modes of the delivery of informed consent, and were then asked, immediately following the biopsy collection, to complete a questionnaire that assessed their understanding of the project information and consent process. the first group of research participants were assigned the standard information and informed consent procedures, based upon the work of aalto-setälä and colleagues (2009), and were then assessed their under- standing of the consent process through a questionnaire. the second group were shown a video animation that was developed by the research team (comprising of clinicians, scientists and social scientists). the video animation focused on communicating poorly understood concepts found in the recall questionnaire. the video animation was shown to this second group and then was assessed by using a questionnaire, which participants completed after viewing the video animation (http://ipscdb.org). the remainder of participants underwent an interactive consent process. the third and final group received the revised ethics and informed consent procedure utilising the standard method and the video animation. does interactive informed consent work? in assessing the interactive informed consent procedure, 147 partici- pants understanding of the ipsc consent process were recorded. of these, 32.7% (48) were in the standard consent group, 34.0% (50)

3 the immortal life of ethics? the alienation of body tissue … 79 were in the video animation group, and 33.3% (49) were in the inter- active exam group. participants were aged between 34 and 79 years, with a median age of 66 years. the majority of participants were female (67.3%), with 57.1% (84) of participants reporting being either person- ally affected, or having a family member affected, with a condition rel- evant to the research. of our three groups, those that received the standard information and consent procedure demonstrated a generally poor understanding of the material. contrastingly, the video animation and interactive consent groups demonstrated an improved understanding. the video anima- tion group showed an equal or greater proportion of correct responses in thirteen out of fourteen questions compared to the standard consent group and showed a statistically significant improvement in four ques- tions (chi-squared test p < 0.05). the interactive consent group had a higher or equal level of understanding across all fourteen comprehen- sion questions when compared to both the video animation and the standard consent group, and showed a statistically significant increase in the proportion of correct responses for eight comprehension questions when compared to the standard consent group, and four compared to the video animation group (chi-squared test p < 0.05). significantly fewer respondents from the standard consent group (27.1%) understood the potential for samples of ipsc lines to exist indefinitely compared to the video animation group (76%, p < 0.001). understanding was greater again in the interactive consent group (91.8%) compared to both the standard consent and video animation groups (p < 0.001, p = 0.032, respectively). this poor understanding of those given the standard consent procedure is concerning, especially in the light of the various ethical issues that we examined earlier in the chapter and well illustrated by the ongoing controversy of the hela cell line (skloot 2010). comprehension of the immortal life of the cells was another important part of the consent and research process, as not understanding this aspect of the consent procedure may have huge ramifications if the tissue donor withdraws their consent or their descendant wishes to, thus having an impact on future research and the development of therapies. another interesting result from the use of the video animation and interactive consent process was a greater comprehension of the science www.ebook3000.com

80 c. macgregor et al. underpinning the research. for example, more research participants understood ipsc pluripotency. the proportion of correct responses rose from 75% (36) to 94% (47) with the addition of the video animation to standard consent (p = 0.009), and rose from 75% (36) to 95.9% (47) with the addition of the interactive exam (p = 0.003). an increase in the comprehension of several problematic issues, namely that animals would be used in the research, that their tis- sue samples would not be injected into humans and that their sam- ples would not be used in reproductive cloning, all improved greatly within the video animation and interaction consent procedures. only 47.9% (23) of the standard consent group were aware that animals could be used in the research, while this was understood by 92.0% (46) of the video animation group and 98.0% (48) of the interactive exam group (both, p < 0.001). only 58.3% (28) of the standard con- sent group and 66.0% (33) of the video animation group understood that their samples would not be injected into humans, while this was understood by 89.9% (44) of the interactive consent group (p < 0.001, p = 0.004, respectively). the potential for pharmaceutical compa- nies to be involved in research was understood by 45.8% (22) of the standard consent group compared to 88.0% (44) of the video anima- tion group (p < 0.001) and 100.0% (49) of the interactive consent group (p < 0.001). the proportion of respondents who understood that samples would not be involved in reproductive cloning was 70.8% (34) amongst the standard consent group and 84.0% (42) among the video animation group. understanding was greatest among the inter- active consent group (100%), compared to both the standard consent (p < 0.001) and the video animation group (p = 0.006). we would argue that the use of video animation and interactive con- sent procedures is an effective way to improve research participants understanding (mccaughey et al. 2016a, b). however, we believe a major part of the success with the interactive consent procedure was due to our previous ethics and informed consent study that helped identify problems in participants understanding of ipsc and what their samples would be used or not used for. identifying these issues early on meant that we were able to design a script for the video that was attentive to the issues that participants had trouble understanding. another key

3 the immortal life of ethics? the alienation of body tissue … 81 factor was the professional quality of the video production and narra- tion—the high quality of the visuals and sound may have helped par- ticipants’ improved understanding. the way in which the interactive consent procedure was designed means that this method and process could be applied to other stem cell science and scientific studies. the use of video animation within the interactive consent process is also a method that could be incorpo- rated into existing projects. we would argue that an interactive consent process should become a widely adopted model, as it helps to ensure all research participants are receiving similar information, reducing the inconsistencies in consent information shown to negatively affect other fields (bollschweiler et al. 2008; ryan et al. 2008; synnot et al. 2014). it is the professional, legal and moral duty of the researcher to provide information and informed participants to obtain their consent. our research demonstrates that current standard models of consent are fail- ing participants. we believe the interactive consent model sets a new standard for informed consent in ipsc research and provides a model that can help researchers inform their participants to avoid any contro- versy in the future. conclusion this chapter sought to explore issues relating to the ethics and informed consent procedures in ipsc research within the context of a study that collected tissue samples to examine eye disease. we have outlined how, within ipsc research, a number of ethical issues need to be con- sidered when engaging with research participants, such as privacy and poor recall of informed consent procedures. this chapter has outlined an attempt to improve ethics and informed consent procedures and research understanding and has argued that scientific research must set a new standard for achieving informed consent. our study reaffirms other research, such as that conducted by rowbotham et al. (2013), that an interactive informed consent procedure can improve research partici- pant comprehension about their research involvement, its processes and its risks. interactive consent procedures, using a video animation, www.ebook3000.com

82 c. macgregor et al. standard consent processes and the testing of comprehension, have been shown to be an effective way to help improve research participant understanding of research and to communicate information, so that participants are more fully aware of what they are consenting to. we would argue that an interactive consent procedure should become best practice, as researchers have an ethical duty to ensure that research par- ticipants are fully informed when providing consent. by advocating that interactive consent should become best practice in scientific research, it is hoped that past cases, such as the controversy surrounding henrietta lacks, can be avoided. acknowledgements this work was supported by grants from the national health and medical research council (nhmrc) project grant (1059369), the bright focus foundation, retina australia, the ophthalmic research institute of australia and the clifford craig medical research trust. alex hewitt is also funded by a nhmrc fellowship. alice pébay is supported by an australia research council future fellowship. this study was led by alex hewitt and alice pébay. references aalto-setälä, k., conklin, b. r., & lo, b. (2009). obtaining consent for future research with induced pluripotent cells: opportunities and chal- lenges. plos biology, 7(2), e42. bollschweiler, e., apitzsch, j., obliers, r., koerfer, a., mönig, s. p., metzger, r., et al. (2008). improving informed consent of surgical patients using a multimedia-based program? results of a prospective randomized multicenter study of patients before cholecystectomy. annals of surgery, 248(2), 205–211. buccini, l. (2009). developing an instrument to measure informed consent com- prehension in non-cognitively impaired adults, unpublished doctor of public health thesis, university of wollongong, wollongong. cyranoski, d. (2008). stem cells: 5 things to know before jumping on the ips bandwagon. nature news, 452(7186), 406–408. daley, g. q., hyun, i., apperley, j. f., barker, r. a., benvenisty, n., bredenoord, a. l., … & heslop, h. e. (2016). setting global standards for stem cell research and clinical translation: the 2016 isscr guidelines. stem cell reports, 6(6), 787–797.

3 the immortal life of ethics? the alienation of body tissue … 83 dasgupta, i., bollinger, j., mathews, d. j., neumann, n. m., rattani, a., & sugarman, j. (2014). patients’ attitudes toward the donation of biological materials for the derivation of induced pluripotent stem cells. cell stem cell, 14, 9–12. edwards, s., lilford, r., & hewison, j. (1998). the ethics of randomised con- trolled trials from the perspectives of patients, the public, and healthcare professionals. british medical journal, 317(7167), 1209–1212. gold, h. (2011). unit 731. north clarendon: tuttle publishing. gymrek, m., mcguire, a. l., golan, d., halperin, e., & erlich, y. (2013). identifying personal genomes by surname inference. science, 339(6117), 321–324. harmon, a. (2010). indian tribe wins fight to limit research of its dna. new york times. retrieved january 2, 2016, from http://www.nytimes. com/2010/04/22/us/22dna.html?pagewanted=all&_r=0. hoffner, b., bauer-wu, s., hitchcock-bryan, s., powell, m., wolanski, a., & joffe, s. (2012). entering a clinical trial: is it right for you? a randomized study of the clinical trials video and its impact on the informed consent process. cancer, 118(7), 1877–1883. holland, s., lebacqz, k., & zoloth, l. (2001). the human embryonic stem cell debate: science, ethics, and public policy. cambridge: mit press. jones, j. h. (1993). bad blood: tuskegee syphilis experiment. new york: the free press. karpin, i. a. (2006). the uncanny embryos: legal limits to the human and reproduction without women. sydney law review, 28(4), 599–623. khan, a., capps, b. j., sum, m. y., kuswanto, c. n., & sim, k. (2014). informed consent for human genetic and genomic studies: a systematic review. clincial genetics, 86, 199–206. kim, c. (2014). disease modeling and cell based therapy with ipsc: future therapeutic option with fast and safe application. blood research, 49(1), 7–14. landecker, h. (2007). culturing life: how cells becomes technologies. cambridge: harvard university press. lavelle-jones, c., byrne, d. j., rice, p., & cuschieri, a. (1993). factors affect- ing quality of informed consent. british medical journal, 306, 885–890. li, f. x., nah, s. a., & low, y. (2014). informed consent for emergency surgery-how much do parents truly remember? journal of pedartic surgery, 49(5), 795–797. www.ebook3000.com

84 c. macgregor et al. lomax, g. p., hull, s. c., & isasi, r. (2015). the discuss project: revised points to consider for the derivation of induced pluripotent stem cell lines from previously collected research specimens. stem cells translational medicine, 4(2), 123–129. lomax, g. p., hull, s. c., lowenthal, j., rao, m., & isasi, r. (2013). the discuss project: induced pluripotent stem cell lines from previously col- lected research biospecimens and informed consent: points to consider. stem cells translational medicine, 2(10), 727–730. lowenthal, j., lipnick, s., rao, m., & hull, s. c. (2012). specimen collection for induced pluripotent stem cell research: harmonizing the approach to informed consent. stem cells translational medicine, 1(5), 409–421. matthews, r. (2008). medical progress depends on animal models-doesn’t it? journal of the royal society of medicine, 101(2), 95–98. mascalzoni, d., dove, e. s., rubinstein, y., dawkins, h. j., kole, a., mccormack, p., … & knoppers, b. m. (2015). international charter of principles for sharing bio-specimens and data. european journal of human genetics, 23(6), 721–728. mccaughey, t., liang, h., chen, c., fenwick, e., rees, g., wong, r., et al. (2016a). an interactive multimedia approach to improving informed con- sent for induced pluripotent stem cell research. cell stem cell, 18(3), 307– 308. mccaughey, t., chen, c., de smit, e., fenwick, e., kearns, l., mackey, d., et al. (2016b). participant understanding and recall of improving informed consent for induced pluripotent stem cell biobanking. cell and tissue banking. doi:10.1007/s10561-016-9563-8. muller, f. j., goldmann, j., loser, p., & loring, j. f. (2010). a call to stand- ardize teratoma assays used to define human pluripotent cell lines. cell stem cell, 6(5), 412–414. nie, j. b. (2002). japanese doctors’ experimentation in wartime china. the lancet, 360, s5–s6. rowbotham, m. c., astin, j., greene, k., & cummings, s. r. (2013). interactive informed consent: randomized comparison with paper con- sents. plos one, 8(3), e58603. ryan, r. e., prictor, m. j., mclaughlin, k. j. and hill, s. j. (2008). audio-visual presentation of information for informed consent for par- ticipation in clinical trials. cochrane database systematic reviews, 1(1). doi:10.1002/14651858.cd003717.

3 the immortal life of ethics? the alienation of body tissue … 85 savage, r. (2001). animal research: the need for a middle ground. british medical journal, 322(7281), 248. seidelman, w. (1988). mengele medicus: medicine’s nazi heritage. milbank quarterly, 66(2), 221–239. sepucha, k. r., fagerlin, a., couper, m. p., levin, c. a., singer, e., & zikmund-fisher, b. j. (2010). how does feeling informed relate to being informed? the decisions survey. medical decision making, 30, 77s–84s. shukla, a. n., daly, m. k., & legutko, p. (2012). informed consent for cata- ract surgery: patient understanding of verbal, written, and videotaped infor- mation. journal of cataract and refractive surgery, 38(1), 80–84. si-tayeb, k., noto, f. k., sepac, a., sedlic, f., bosnjak, z. j., lough, j. w., et al. (2010). generation of human induced pluripotent stem cells by sim- ple transient transfection of plasmid dna encoding reprogramming fac- tors. bmc developmental biology, 10(1), 1. doi:10.1186/1471-213x-10-81. sims, j. m. (2010). a brief review of the belmont report. dimensions of critical care nursing, 29(4), 173–174. skloot, r. (2010). the immortal life of henrietta lacks. sydney: picador. sonne, s. c., andrews, j. o., gentilin, s. m., oppenheimer, s., obeid, j., brady, k., … and magruder, k. (2013). development and pilot testing of a video-assisted informed consent process. contemporary clinical trials, 36(1), 25–31. sugarman, j. (2008). human stem cell ethics: beyond the embryo. cell stem cell, 2(6), 529–533. synnot, a., ryan, r., prictor, m., fetherstonhaugh, d., & parker, b. (2014). audio-visual presentation of information for informed consent for participa- tion in clinical trials. cochrane database of systematic reviews, 5, cd003717. tait, a. r., voepel-lewis, t., moscucci, m., brennan-martinez, c. m., & levine, r. (2009). patient comprehension of an interactive, computer-based information program for cardiac catheterization: a comparison with stand- ard information. archives of internal medicine, 169(20), 1907–1914. takahashi, k., tanabe, k., ohnuki, m., narita, m., ichisaka, t., tomoda, k., et al. (2007). induction of pluripotent stem cells from adult human fibro- blasts by defined factors. cell, 131(5), 861–872. tam, n. t., huy, n. t., thoa le, t. b., long, n. p., trang, n. t., hirayama, k. (2015). participants’ understanding of informed consent in clinical tri- als over three decades: systematic review and meta-analysis. bulletin of the world health organization, 93, 186h–198h. thomas scott, c., caulfield, t., borgelt, e., & illes, j. (2012). erratum: personal medicine-the new banking crisis. nature biotechnology, 30(5), 466. www.ebook3000.com

86 c. macgregor et al. thomson, j., itskovitz-eldor, j., shapiro, s., waknitz, m., swiergiel, j., marshall, v., et al. (2008). embryonic stem cell line derived from human blastocysts. science, 282, 1145–1147. tutton, r. (2014). genomics and the reimagining of personalized medicine. surrey: ashgate. waldby, c., & mitchell, r. (2006). tissue economies: blood organs and cell lines in late capitalism. durham, nc: duke university press. wendler, d. (2006). one-time general consent for research on biological sam- ples. british medical journal, 332(7540), 544–547. world medical association. (2001). world medical association declaration of helsinki. ethical principles for medical research involving human subjects. bulletin of the world health organization, 79(4), 373. yu, j., vodyanik, m. a., smuga-otto, k., antosiewicz-bourget, j., frane, j. l., tian, s., … & slukvin, i. i. (2007). induced pluripotent stem cell lines derived from human somatic cells. science, 318(5858), 1917–1920. authors’ biography casimir macgregor has a ph.d. in anthropology. he is a research fellow in the school of social science at monash university, melbourne, australia. casimir is co-author of the recently published book stem cell tourism and the political economy of hope by palgrave macmillan. tristan mccaughey studied medicine at monash university and works at the royal melbourne hospital as a doctor. he undertook his honours research with the centre for eye research, royal victorian eye and ear hospital and the department of surgery, monash university, victoria, australia. megan munsie is deputy director of the centre for stem cell systems in faculty of medicine, dentistry and health sciences at the university of melbourne and head of the education, ethics, law and community awareness unit at stem cells australia.

4 on the everyday ethics of stem cell therapies in india nayantara sheoran appleton and aditya bharadwaj introduction the doctor just stopped coming to see us. we were in the hospital, but they didn’t want us there, so they started pretending like we weren’t there. so we came here, as the doctors and therapists come to us, and we know they care about me…and my recovery. (bukeshwar.1 translated from marathi, based on dec 2015 interview notes) the above quote is from a 20-year-old male patient who had trav- elled to mumbai from a rural part of maharashtra. when interviewed, he was in a hospital that specialised in autologous stem cell therapy2 n.s. appleton (*) victoria university of wellington, wellington, new zealand e-mail: nayantara.s.appleton@vuw.ac.nz a. bharadwaj graduate institute of international and development studies, geneva, switzerland © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_4 89

90 n.s. appleton and a. bharadwaj and was about to receive his first transfers later that day. at the age of 16, he started experiencing rapid muscle loss and was diagnosed with limb-girdle muscular dystrophy (lgmd). he went from being able to walk and bicycle to school to being completely bedridden, una- ble to walk around the house without the help of a family member. bukeshwar, an articulate young man, expressed multiple frustrations with his experience of medical treatment. among these was the num- ber of times he had been moved between specialists and hospitals, and the exorbitant fees his family had paid for private health care in india.3 when bukeshwar’s family arrived in mumbai for his treatment, they found that hospital after hospital was unable or unwilling to treat his condition. additionally, they never had a physician who took the time to fully explain the disease or its prognosis to them. when bukeshwar was finally admitted to a neurological ward in a leading private hospital, physicians there were initially willing to spend time attempting to find a cure or a way to stall the progress of his muscle failure. however, a few weeks after his arrival, they withdrew due to the lack of a promising prognosis and eventually stopped coming to see him altogether. bukeshwar felt that he and his family were never given any concrete information regarding his condition or the potential for a cure. at this stage, bukeshwar’s uncle told the family about a ‘stem cell hospital’4 that could help with muscular dystrophy. although the family was not certain about the efficacy of stem cell therapies for lgmd, bukeshwar searched on the internet (although he was digitally savvy, his parents were just func- tionally literate) and decided he wanted to give this therapy a try. after being largely ignored by hospital doctors, bukeshwar spent a week in a clinical setting with constant attention and supervision. unlike his previ- ous experiences, the medical staff engaged him in detailed conversations about his condition. consequently, rather than seeing stem cell therapy as their last option, he and his family wished they had pursued it earlier. after hearing similar stories about medical practices in india and spend- ing almost 2 years in and out of various sites providing stem cell therapy, bukeswhar’s account was a reminder to the researchers that the imposition of a universalist ethics of stem cell research and therapy may not be use- ful for understanding the medical and everyday worlds within which stem cells operate in places like india. instead, in this chapter, we argue for a www.ebook3000.com

4 on the everyday ethics of stem cell therapies in india 91 new bioethics that is cognisant of local realities alongside global scientific expectations for the future of stem cell research and therapy in india. for our analysis, we draw in particular on veena das’s concept of ‘ordinary ethics’, in which she says, ‘unless we can come to grips with the every- day life within which moral and ethical questions may be grounded for clinicians, patients, and policymakers, there is little use in debating the relevance of bioethics for low-income countries’ (das 1999: 100). das contends that even as academic and policy initiatives aim to ‘include ques- tions of ethics in non-western countries’, it is only by understanding the everyday that we can hope to work towards a bioethics fit for an evolv- ing global biomedicine. we suggest that a new bioethics should draw on experiences and expectations of local indian patients seeking and having undergone stem cell therapies, and that it should acknowledge the inter- nal, familial and societal contradictions patients grapple with, in addition to financial burdens. further, we advocate for a bioethics that draws on the state, not only to fund and regulate, but also to ensure treatment and dignity for people with rare and orphaned diseases. we contend that our approach goes beyond a techno-regulatory framework aimed solely at cre- ating pliable subjects for global stem cell research and therapies. methods the data in this chapter draw on over 2 years of fieldwork in india. this includes multiple semi-structured interviews with 102 interlocutors to create a ‘thick description’—a detailed, nuanced, and textured account of the respondents’ understanding of and relationships with stem cell research and therapy. it involved talking with patients over cups of chai as they prepared for or recovering from stem cell therapy for vari- ous diseases and injuries, including spinal cord injuries, duchenne muscular dystrophy (dmd), lgmd, autism, cerebral palsy, intel- lectual disability, diabetes, arthritis, and optic atrophy. this chapter focuses on local indian patients and is underpinned by a larger research project, which is informed by interviews and meetings with clinicians, policymakers, researchers, lawyers, and pharmaceutical-company repre- sentatives that constitute about 50% of the interviews and interactions.

92 n.s. appleton and a. bharadwaj the entire project is supported by a european research council (erc) grant (#313769). in this chapter, all names have been changed to preserve confidentiality, as per the ethical protocols at the graduate institute of international and development studies, geneva, and the european fp7 framework guidelines. all respondents were informed about the nature of the research project and their ability to withdraw at any point from the study. the research ethics clearance exercise, in and of itself, was instructive in framing how the authors thought about ethics in biomedical research. moreover, in committing to spend exten- sive time at the sites of their analysis, the authors have refrained from what might be termed ‘parachute anthropology’—where a few days are spent collecting large numbers of interviews without a commitment to understanding the textured setting of the everyday. it is in this everyday understanding of biomedicine in india that we aim to situate a call for nuanced understanding of everyday bioethics vis-à-vis stem cells. the research writing here is based on extensive fieldwork from october 2013 through december 2015 in india, where the authors moved and lived for the duration of the project. based locally in delhi, the first author, appleton, travelled to places across india to map out the stem cell research and therapy terrain in india. the cities where field- work was conducted include pune, mumbai, hyderabad, bangalore, chennai, vadodara, delhi, and the suburbs of noida and gurgaon. in each of these locations, participant observations were conducted in mul- tiple sites, including large multi-specialty hospitals in urban hubs and small labs and clinics in smaller cities. the ethnographic data (that is, interviews, researchers’ field notes about their impressions and expe- riences, etc.) were organised and key themes were identified while appleton was still in india. this served two purposes—to thematically group the data being collected and to see whether certain issues being raised by the interlocutors were missing from the interview protocol. the key themes identified in this chapter were drawn from responses to questions about the government’s role in stem cell therapeutics and the ethics of stem cell therapies for local patients. both bharadwaj (bharadwaj and glasner 2009) and appleton (sheoran 2012) have written about their insider/outsider status while conducting fieldwork in india. although they are both originally from india, they have lived www.ebook3000.com

4 on the everyday ethics of stem cell therapies in india 93 outside of it for extensive periods of time. this positionality has allowed them to develop the empirical realities evident in the data with a sub- tle understanding of how bioethics are lived, articulated, rejected, and reconfigured by differently positioned stakeholders in india. bioethics in a local reality since its inception, the ‘bioethics enterprise’, termed by arthur kleinman (1999), has been a project that has garnered critique from analysts within the social sciences in general and anthropology in par- ticular. the critique of the ‘bioethics enterprise’ ranges from the focus on instrumentalising ethics within medical practices (e.g. prioritising the importance of consent forms and informed consent to the detriment of patient care in medicine, as documented by corrigan (2003) and corrigan et al. (2009)), to its potential foreclosure of discussion regard- ing the changing social, economic, and political realities in divergent local settings that impact bioethics (thompson 2013: 24). within criti- cal social-scientific traditions, there has been a dogged effort to account for not only the ethics of medicine, but also the ethics of bioethics nar- ratives and discourse (bosk 2001; kleinman 1995: 41–67). this conver- sation takes on added salience in the context of increased global trade in medical and pharmaceutical sectors, and as parent organisations commit to research that is designed to cause ‘no harm’ to participants in global settings. in this changing climate, research and practice are expected to meet particular (western) standards—otherwise the potential for harm and exploitation would be too great (bosk 1999; muller 1994). although well intentioned, the quest to implement global standards and best practices assumes that a western model of bioethics should and could be replicated universally (see corrigan 2004). the underly- ing assumption is that it is better to protect participants and research subjects from unscrupulous medical and clinical practitioners than to let local norms be the guiding principles. bioethics committees, set up in multinational pharmaceutical corporations and leading research hospitals, therefore work to assure local constituents and sharehold- ers that ethics frameworks are in place to ensure non-exploitation of

94 n.s. appleton and a. bharadwaj research participants and to ensure that globally established parameters are instituted as premier protectors for non-western populations. in this respect, the ‘one-size-fits-all’ model of bioethics is not only problematic; it ironically fails the vulnerable populations it seeks to protect. early work by das emphasising the importance of the ‘everyday’ has been further developed in terms of the notion of ‘ordinary ethics’. das explains what she means by the term as follows: i will argue for a shift in perspective from thinking of ethics as made up of judgments we arrive at when we stand away from our ordinary prac- tices to that of thinking of the ethical as a dimension of everyday life in which we are not aspiring to escape the ordinary but rather descend into it as a way of becoming moral subjects. such a descent into the ordinary does not mean that no attempt is being made to work on this ordinary in the sense of cultivating critical attitudes towards one’s culture as it stands, and also working to improve one’s conditions of life but that such work is done and not by orienting oneself to transcendental, objectively agreed- upon values but rather through the cultivation of sensibilities within the everyday. (2012: 134) this commitment to locate the ordinary everyday, before arriving at a new bioethics for the everyday, drives our work on issues surrounding stem cell research and therapies as these new biotechnologies expand globally. anticipatory moment: before regulation, after guidelines the local and global media narratives about indian stem cell therapy clinics and hospitals range from stories of miracles and malpractice to highlighting the reality of those patients who are unable to access medi- cal care for ‘orphaned diseases’. beyond the hype and hyperventilation lies the larger story of how local patients from all socio economic back- grounds experience and engage with the state, medical establishments, and the bioethics of stem cell therapeutics. it can be said that there is www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 95 something particular, and yet not extraordinary about doing stem cell therapies in india. somatic cells (that is, all kinds of adult stem cells in the body) are sought to replace human embryonic stem cells (hesc) for a host of scientific applications. as such they represent the new fron- tier in personalised regenerative medicine. if induced pluripotent stem cells (ipscs) derived from adult cells can be as efficacious as hescs, then the need for cell derivation from embryos (which, due to differ- ent origin of life perspectives, are ethically fraught entities) will decline (krimsky 2015: 75–79). while hescs are important research tools, ipscs are seen as ethically safer to work with and easier to promote for effective therapeutic applications on a global scale. proponents of somatic cells view them as potential cures for con- ditions ranging from diabetes and autism to spinal cord injury. nevertheless, there has been significant criticism around issues of safety, efficacy, cost, and the ethics of these stem cell therapies and products in both academia and health-policy circles (bharadwaj 2012; cattaneo and corbellini 2014; fukuyama 2002; lauritzen 2005; ong and chen 2010). within the social sciences, ethical panic around embryonic stem cells is being replaced with a much more nuanced understanding of how stem cells are shaping the future of regenerative medicine and society overall (bharadwaj 2008, 2013a; franklin 2006, 2007, 2013; thompson 2013). in this literature, anthropologists are unpacking questions of eve- ryday ethics, of a new biomedical reality where patients cite free will and the right to choose their medical treatment, even those deemed ‘experi- mental’, when other options fail (see bharadwaj 2013a). in india, hesc and somatic cells are established therapeutic options. in this chapter, we focus on the therapeutic applications of minimally manipulated adherent bone marrow cells (abmcs). in informal con- versations during the explanatory phase of our research project, prac- tising physicians told the first author that some clinics and physicians were using mesenchymal stem cells (mscs) derived from ipscs (ipsc– msc),5 and some were using bone marrow-derived mscs (bm–mscs). the first author’s fieldwork in hyderabad, mumbai, and bangalore made evident that research labs and facilities deriving mscs from ipscs con- tinue to conduct lab-based research, animal testing, and clinical trials, but that they hoped to see the introduction of a regulatory framework for

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96 n.s. appleton and a. bharadwaj applications which have been primarily theoretical thus far. some of their clinical trials are listed in global clinical studies databases like clinicaltrials. gov (the us clinical trial database) and ctri.nic.in (india’s clinical trial registry). however, the patients and physicians included in this chapter are from clinics that, since 2014, have only worked with abmcs; that is, patients’ own biological material returned to their bodies. the clinics offering stem cell therapies have been working with abmcs rather than ipsc–mscs as a result of national guideline changes. these guidelines are not yet regulations, and in the absence of a regulatory law they serve as indicators of best practice, ensur- ing that practitioners remain informed of developments in the field and practice therapies within the state’s purview. in december 2013, the indian council for medical research (icmr), under the aegis of the department of health research and department of biotechnology, issued an updated national guidelines for stem cell research (indian council for medical research 2013). this docu- ment updates the icmr’s 2007 guidelines. one of the key differ- ences is the use of the word ‘therapy’, which is not an oversight but a key point made by the regulatory authorities, and is stated as such in the guidelines: accordingly, any stem cell use in patients must only be done within the purview of an approved and monitored clinical trial with the intent to advance science and medicine, and not offering it as therapy. in accordance with this stringent definition, every use of stem cells in patients outside an approved clinical trial shall be considered as mal- practice. it is hoped that this clear definition will serve to curb the malpractice of stem cell ‘therapy’ being offered as a new tool for curing untreatable diseases. (indian council for medical research 2013: ii) although these guidelines are well intentioned, they offer a framework in which the icmr is only responsible for stem cell-based research and not therapeutic applications. in the absence of any law, these guidelines suggest that stem cell therapy outside the context of a clinical trial could be considered malpractice. the regulation of cell therapies would thus fall to the drug comptroller general of india’s purview, since both www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 97 clinical trials and prospective drug development would require his office’s approval. the stem cell material of an individual (autologous stem cell transfers) would be sold back to that individual as a drug, fol- lowing a long scientific–bureaucratic chain of phase i through iv clini- cal trials.6 however, as these are guidelines rather than regulations, there remains an opportunity to engage in a productive conversation about bioethics at the local level. the clinics providing abmcs, and the patients receiving them, can continue to do so while making the case they were legally receiving their own material as therapy. of course, if these guidelines become regulation, then this human biological material becomes a product and abmc therapies will be illegal. it is this liminal space that we call the ‘anticipatory moment,’ before regulations are constituted but after guidelines have been issued, that the global bioethical schema can be reimagined. the regulatory and bioethical guidance framework in india, like the sci- ence driving stem cell innovations and their therapeutic applications, has been in a state of continuous evolution. while some scholarship has critiqued the current moment as a ‘regulatory vacuum’ in asian countries (faulkner et al. 2006; hara et al. 2014; salter 2008; tiwari and desai 2011; tiwari and raman 2014; vertes et al. 2015), we suggest that this moment is a potential space for examining the eve- ryday complexities of doing stem cell research and therapies in india. this ‘anticipatory moment’, where different stakeholders practice, wait, or critique the applicability of global bioethics for stem cell therapies in india, allows us to imagine a new, more inclusive bio- ethics. this moment makes visible conversations that may be stifled once regulations are in place, as local voices ask for a bioethics that is cognisant of its western genealogy, but also accounts for the ways in which biomedicine and biotechnologies are lived, experienced, and engaged with in other global spaces. anticipatory moment: cost of care in addition to the ‘regulatory vacuum is an ethical breach’ narra- tive, there has been a focus on improving bioethics around stem cells by focusing on the costs (both material and immaterial) that drive

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98 n.s. appleton and a. bharadwaj patients to seek out so-called experimental treatments.7 in other words, concerns about the experimental nature of stem cell technologies and their high-cost therapeutic application in the absence of proper ethi- cal frameworks have been key for the indian governmental authorities and global scientific and academic scholarship. this concern is justifi- able, as patients’ well-being and rights must be placed first when imag- ining the future of regenerative medicine. concerns around stem cell therapies in india focus on therapies being offered in non-clinical trial settings at high financial costs. the financial aspects of patient negotia- tions (with physicians and/or clinics) for stem cell treatments are clearly visible, which on one level is disturbing; however, this visibility gives us an opportunity to examine the ethics around stem cells in india. this is a time where regulatory bodies have not created a universal cost out- line for stem cell treatments, nor is therapy only available under clini- cal trial settings. this then is an anticipatory moment, a liminal space where patients pay for therapies, but along a price gradient determined by their personal circumstances. during the course of this research, the price for therapeutic treatment ranged from rs. 70,000 to rs. 300,000 (usd $1400–$6000), based on need and ability to pay. additionally, the cost of treatment, while offered at a standardised price within a clinic, differed along two sepa- rate lines between clinics. first, clinics in bigger cities like delhi and mumbai had higher costs attached to treatments versus smaller cit- ies like hyderabad or bangalore. second, bigger clinics and hospitals, with larger staff and newer technologies, had higher costs compared to smaller clinics or individual physicians doing procedures in larger hos- pitals. however, this differential price mapping is not exclusive to stem cell-related medical treatments; rather, all private medical care in india is organised along these parameters. however, it is noteworthy that even within an individual clinic or hospital, performing stem cell therapies based on a fixed price—oftentimes the patients’ income, economic precarity, and necessity of treatment—leads to lower than advertised charges. the higher charges often included additional services such as room and board for families. multiple patients who were interviewed received therapies funded by a charity. although the costs for stem cell www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 99 treatments are seemingly high, they are similarly priced to treatments offered in private hospitals and clinics for other specialised care. further, financial negotiations with physicians and clinics reflect and replicate the same modality in the non-stem cell medical world in india, where direct appeals to physicians alongside conversations through someone with jaan-pheechan (familiarity with hospital staff or the organisation) are common. patients freely spoke about how much they paid for their treatments and their negotiations. in the absence of regulatory frame- works that sanitise or organise the cost factors around the therapeutics framework, the clinics realise there is no need to divert funds or crea- tively categorise them to make research and therapy permissive. this vis- ibility lends itself to a conceptualisation of the ‘regulatory vacuum’ as a space in transition where it is easy to identify, categorise, and perhaps correct the economics that drive scientific breakthroughs. some scholars continue to speak of india as an ethically problem- atic space due to the lack of regulatory oversight, rather than critiquing the process and product of regulatory bodies for biomedicine and bio- technologies. the constant articulations of the exploitation of patients by ‘local mavericks’ obfuscate the fact that, in regulating the stem cell industry, the state is working to create an environment more conducive to global investment in india, which creates another level of bioethical quandaries. in our work, we have instead used this moment of regula- tory ambiguity as a nodal point of analysis, where drawing on patient’s experience of stem cell therapies allows us to imagine a new bioethics. as will be shown, patient interviews reflect key emerging ideas about patient’s expectations vis-à-vis bioethics for stem cell therapies. patients and patient advocates (often, family members) grapple with internal and familial contradictions to seek out stem cell treatments. for them, the bioethical framework that could best arise out of state regulations is based on an expectation, where the state not only regulates and funds, but also actively enables treatments for orphan diseases and dignity in treatment. these conversations hinge on the fact that the patients are speaking of their biological material being returned to them, without interventions whereby this material is converted to a marketable prod- uct sold back to them.

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100 n.s. appleton and a. bharadwaj indian patients … and their bioethics while there have been some concerns about the media enticing patients to travel internationally for treatments (petersen et al. 2016; petersen and seear 2011), the global media takes a conservative or cautious line regarding stem cell treatments in places like india (fitzpatrick and griffin 2012). the promissory value and hope of potential treat- ments have increased the scrutiny on regulatory bodies in asian coun- tries even as patients travel locally and globally to seek cures (bharadwaj 2013b; song 2010). oftentimes the global bioethical framework appli- cation required of indian stem cell therapy clinics and hospitals imagi- nes the patient as a global middle-class (or upper-middle-class) citizen. however, emerging scholarship is turning the gaze to travel within and between countries in the south for medical treatment (bochaton 2015; crush and chikanda 2015; kasper in preparation; ormond and sulianti forthcoming). this does not mean that the term ‘medical tour- ist’ is no longer applicable, but rather a critique of the limited focus on the medical tourist being one from the global north, travelling to the global south. further, in looking at in vitro fertilisation (ivf) treatment seekers in the middle east, marcia inhorn has debunked the idea of patients undertaking expensive travel to partake in very painful (both physical and emotional) procedures as “tourism” (connell 2015; inhorn 2015). getting dental caps installed in india or china, as opposed to the usa or uk, while getting to enjoy a bit of the local cuisine after the treatment, could be dubbed medical tourism. but the invasive proce- dures inhorn describes as the standard for assisted reproduction, or the extensive and long-term stem cell therapies witnessed as part of this pro- ject, make evident that there is little time, money, or emotional energy to indulge in ‘tourism’. in our project, the focus has been on looking at indian populations seeking out stem cell therapies in indian hospi- tals and clinics. while there has been some level of travel involved for a large number of patients, they are not tourists in the sense imagined by some scholarship on medical travel.8 rather, they are in spaces that they would not have travelled to had it not been for the diseases or diagnosis. most of the time, the financial and emotional burden is too immense to allow accompanying family members the chance to be a tourist. www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 101 this chapter, while focusing on the larger argument for bioethics that emerge out of the everyday, is premised on the idea that the everyday in stem cell clinics in india is for indian patients that have few or no options for care and treatment for rare and orphaned diseases. keeping this in mind, this chapter draws on our interviews and meet- ings with patients that were rural or urban middle- and lower-middle- class families with limited resources, but with a determination to live and have a functionally improved quality of life. frequently, the patient (including adult patients) travelled with both parents and sometimes a relative who was well versed in local transportation systems. always, one family member was assigned to work with the medical system and to discuss the patient and the treatment. most of the interviews then became conversations about ethics and regulations, not just with the patient but with familial interlocutors, who offered the most critical take on the treatment and the processes, offering a glimpse into the ten- sions families resolve internally. this internal conflict became evident in a few key interviews. in mid- 2015, the first author interviewed ashok umeshwar, a 61-year-old male with hereditary motor and sensory neuropathy (hmsn), and his brother. ashok’s brother, alok, was an mbbs doctor and retired chief medical officer of a district in uttar pradesh. alok was sceptical of stem cell research. even though both brothers lived in urban and semi-urban spaces, were educated, and had maintained government jobs throughout their lives, they were not part of the upper-middle-class elite. their financial sit- uation was precarious, and they had asked the hospital to consider their case on a ‘special basis’ where they were permitted to pay a subsidised price. when pushed on the issue of his scepticism, alok explained that his under- standing of stem cells was that they were most effective and efficient for ‘young injuries and patients’. ashok had been first diagnosed in 1991; the interview took place in 2015. the brothers explained they had a younger brother with a similar diagnosis to ashok who had passed away; however, he had also suffered from scoliosis. appleton asked alok about his doubts. not doubt. i’ve seen some cases… i’ve not seen with my own eyes, but i heard about it. there are so many people who want to see with their own eyes, who want to experience it themselves also, so i have no doubt, but

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102 n.s. appleton and a. bharadwaj i have no choice. there is difference between doubt and choice. there is no choice. if there is no treatment, you have to do… to go for a bet- ter option. people are saying, people are doing.… this institute, is also a research institute. (trans. hindi and english, july 2015) alok highlighted the reality that, within medical spaces in india, there was no room for a 61-year-old man suffering from hmsn. there was an implicit understanding that the healthcare systems were over- burdened at both private and public levels. while sceptical about this late-stage treatment option, he supported his brother’s decision, stat- ing that he believed that stem cell therapy would have been promising had it been given at an earlier stage of the prognosis. while untangling ‘choice’ and ‘doubt’, alok, realised that he occupied a precarious posi- tion. at one point in the interview, he turned to the first author and said, ‘you’ve been to many stem cell centres. you know this. the earlier the stage and younger the age, the more stem cells are produced. and as you get older, less cells are produced’. he went onto to talk about his brother being older and the late-stage therapy. he attempted to resolve this internal tension throughout the interview. it was evident that, for alok, if the therapies were to work it would be easy for him to believe in them despite his doubts. however, if the therapies were unsuccessful, then he would draw on his idea about the late-stage treatment to justify the failure. ashok, even in the face of his brother’s scepticism, chose to undergo this therapy option. he came to stem cells therapies as a treatment option precisely because of the lack of other viable options. his decision highlighted the fact that patients want to explore all treatment options to live productive, dignified lives regardless of their age. academic and non-academic debates and critiques must ask whether limited resources at both familial and state levels should be employed to extend the lives of patients in the hope of a potential cure or to improve their quality of life.9 fay ginsburg and rayna rapp (2013) have written extensively about the tensions between supporting quality of life for people with disabilities, while also acknowledging that the focus on ‘cure’ suggests www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 103 that a life with disabilities is not liveable with dignity. their scholarship offers a two-pronged approach to articulating bioethics vis-à-vis stem cells in india’s medical reality—to aim to improve the basic healthcare structure for patients with all diseases, while being able to look at stem cell therapies moving in the right direction towards improving treat- ments for orphaned diseases. when talking about bioethics in india that ought to emerge out of an everyday reality, scholarship needs to be aware of the various tensions (internal, familial, economic, and medi- cal) that patients overcome to seek treatments. while a global bioethi- cal framework would be non-exploitative and a safeguard in some ways, it would not address the limited medical world within which some patients seek treatments or the many barriers they overcome for these therapies. when asked about the ethics and regulations the state was trying to enact, alok noted that ‘the government has a role in everything. it should be in everything. currently, in the basic health area, they can’t seem to do it properly. so how will it happen here? one option would be for it to be fully supported’. his expectation, like many of the other respondents, was for the state to support stem cell therapies for patients, rather than creating regulatory frameworks that undercut therapeutic support until it becomes a treatment modality offered only through a pharmaceutical product. the expectation of a more involved and responsive state was a theme that emerged in every interview. another patient’s family, interviewed in mumbai in november 2014, made evident a similar dynamic. a 48-year-old male patient, mahesh tilak, suffered from a spinal cord and brain injury after a motorcycle accident, in a small town close to goa. after his accident, the doctors feared for his memory, his speech, and his ability to walk. he spent 14 days in the intensive care unit (icu) facility in a private hospital in goa. a year after the accident, he was able to speak clearly and was able to retain all of his memory. however, could not use his hands or legs. when interviewed in 2014, he signed the consent form presented before the interview and said, ‘this is the first time i have been able to write in a year’. in conversation with manesh, his intense desire to be able to write, walk, and use his limbs for daily living was evident.

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104 n.s. appleton and a. bharadwaj when asked about ethics, regulations, and the role of the government, manesh and his family offered the view that this therapy should be available even in government hospitals. they acknowledged that the price was prohibitive for some people, but if the public hospitals pro- vided these options, then garib log (poor people) would also be able to benefit from the science. while used to not being part of the public health care system for this injury, because of the severity of the injury and treatments thereafter, mahesh and his family believed that stem cell therapies needed to be expanded rather than curtailed as they could help people in similarly dire situations. in all interviews, it became evi- dent that stem cell therapies ought not to be the first line of treatment; however, for severe injuries and conditions, it should be encouraged by the state within the public healthcare system. another patient, ravinder sethia, who we met in gurgoan (a sub- urb of delhi), was the parent of a 13-year-old patient suffering from dmd. ravinder was articulate about the role of the state and what the absence of regulation in the current milieu enabled. he also was wary of the kind of regulations that would need to be put into place to meet particular ethical standards. an upper-middle-class, highly edu- cated, and influentially placed parent, he might be considered a patient advocate as he pushed for therapeutic options for his son. patient advo- cates, thompson points out, are heavily invested in particular treat- ment modalities (thompson 2013: 42–43). mr. sethia took a sabbatical from his financial advisor position, which required him to travel and live overseas in the middle east for long durations. he became his son’s primary caregiver and devoted himself to finding a treatment for his son’s diagnosis. based on the research studies on stem cell therapies he reviewed, he asked a research lab in india whether they would create a particular protocol based on a successful one he had followed through academic publications. under medical supervision, this protocol was created and administered to his son at a leading private hospital in india. the location of his son’s primary care was not a stem cell clinic or hospital (that is, it did not exclusively work with stem cell therapies) but a regular hospital. mr. sethia used his personal financial resources and proactively nego- tiated with medical institutes in order to undertake stem cell therapy for www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 105 his son. when i asked him about the ethics of stem cell treatments in india and the role of the state, he quipped: it is the lack of regulations in india that allow me to try these treatments for my son, or i would just have to sit and wait for the end. if the regula- tions were very stringent, i would just have to passively sit and wait to see what happens globally and then hope someday some company would decide to bring the treatment option to india. as you know, with dmd, that is not an option. he continued, in a more sober tone: it would be wonderful if the government10 would invest and develop stem cell therapies in india. but they won’t, they can’t. it is a very big country with a lot of issues. they will now start to focus on how to shut us down, people like us doing it on our own, rather than help us. this sentiment was often repeated. the patients and patient-support groups appleton interviewed were hoping for the best from stem cell treatments. however, they were aware of the precarious space they occu- pied: if the treatment worked, or even helped marginally, access could be denied based on the guidelines becoming regulations. the indian state is currently trying to be responsive to ethical con- cerns about patient exploitation in some stem cell clinics, but at the expense of other conversations where patients ask for stem cell therapies and treatment, rather than cures, for rare and orphaned diseases. in this situation, the state should be wary of creating a regulatory environment where the only form of permissible biomedical interventions comes from large medical investors in stem cells at the cost of patient care and dignity. a move that would make these treatments virtually unafford- able for the vast segment of people who currently seek them. the indian state is not a monolithic entity, but rather a complex assemblage of techno-bureaucratic peoples and policies, particularly when it comes to the ethics and regulations of stem cell treatments. when writing about the indian state, akhil gupta (2012) shows the complexities involved in enabling programmes which aim to help the

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106 n.s. appleton and a. bharadwaj poor in india but which fail to do so, leading to a form of structural vio- lence encoded within bureaucratic processes (gupta 2012). the indian state and medical establishment walk a fine line, and this moment of bioethical ambiguity should encourage critical voices ensuring a bioethi- cal future that does not merely replicate global frameworks but creates one cognisant of indian medical realities. the push in india to create systems that replicate the bioethical reality that prevails in the usa and the uk should keep in mind that a bioethical framework meet- ing global standards means little to a local patient. particularly, if these standards do not allow patients to survive or seek treatments by using their own material for therapy and receive dignity in their treatment. conclusion the world of biomedicine and bio-innovation is now interconnected in more complex ways than previously imagined. from the first studies of globalisation to contemporary anxieties about the free movement of jobs and people, medicine and technological innovation has been on a forward move to connect, grow, and compete. stem cell research and therapies are but one example of both academic and practical biomedical global con- nectivity. this requires a social-scientific perspective of stem cell research and therapy more nuanced than one which situates stem cell therapies ‘over there’ as problematic. to read scholarship that demonises all stem cell clinics and facilities in india is unhelpful, and does a great disservice to scientific achievements in the field made against formidable odds. this does not mean there should be no scrutiny of bioethics and bioethical applicability in india or other non-western places; rather, it should be focused on imagining a bioethical response based on those commonalities that help us imagine a better future for patients with diagnoses that do not allow for easy medical diagnosis, therapy, treatment, and care. this chapter, while a critique of the bioethics enterprise and the anxi- ety around its bureaucratic reach into already bureaucratic indian medi- cal governance structures, is not an attempt to undercut the deep need and desire of the patients and researchers involved in this project for a rigorous ethical framework that that would ensure dignity, care, right www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 107 to health, treatment, and recovery for patients in india. as the ‘embryo panics’ around hesc begin to subside, we need increased vigilance for the different kinds of emerging stem cell therapeutics. this vigilance will have to be situated in the reality it wishes to tackle. the established cri- tique from within euro-american science focuses on the future-facing promise of stem cells and what they can and cannot do when cultured and nurtured in the lab. the focus should be on opening the debate where biomedical systems and new emerging biotechnologies merge. the most at-risk patients are the local, marginally educated, and those desperate for treatments. one way to ensure an ethical and moral safety net for them is not to ask that the ‘regulatory vacuum’ in india be addressed immediately to meet global standards. rather, it is important to recognise that the medical world in india is an ethically fraught space, and although some foreign patients will travel there for biotechnological interventions, it is the local patients who desire state regulations that are responsive and responsible to local needs for care and treatments for rare and orphaned diseases. it is in the absence of state support and the basic rights of patient dignity that local patients seek treatments that may be dubbed ‘experimental’. it is patients like ashok, bukeshwar, mahesh, and ravindra’s son who need a bioethics that is responsive to them and their needs and not a bioethical framework that deprives them of therapeutic options because it does not meet globally established bioethical stand- ards. the conditions are not ideal, but this long-term extended project has made evident that there is a lot of room for improvement in not only stem cell therapeutic applications, but also medical care in india. in the quest to instrumentally sanitise the field of stem cell therapies in india by asking clinics to meet globally established bioethical standards, we may perhaps miss the chance to create a new biomedical intervention that does not replicate the historically problematic hierarchies within biomedicine. notes 1. pseudonyms are used for names of all respondents in this chapter. 2. stem cell therapy is a treatment modality being offered to certain patients whereby stem cells (allogeneic [stems cells received from

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108 n.s. appleton and a. bharadwaj a donor] or autologous [patients receives stem cells from themselves]) are injected into a patient. 3. private health care runs parallel to the public health care in india, with high consultation and treatment fees. the public healthcare system in theory aims to serve all indians across the diseases and diagnosis spec- trum; however, in practice it is overburdened, underfunded, grossly mismanaged, and enables a private medical market to exist for the pub- lic service medical practitioners—from nurses to surgeons. 4. the research respondents that i met in this particular stem cell facility called it a ‘stem cell hospital’ because it was bigger than a clinic (which typically is a 1–3 room operation) and only performed stem cell thera- pies. 5. ipsc–mscs are mesenchymal stem cells derived from induced pluri- potent stem cells. mscs are stromal cells that can differentiate into dif- ferent cell types, including bone cells, muscle, cartilage, and fat cells. simplistically put, mscs that are derived from those cells that have been induced from adult cells (ipscs) rather than embryos are labelled ipsc–msc. 6. when discussing the ‘scientific–bureaucratic chain of phases i through iv clinical trials’, the authors talk of the process it takes a chemi- cal composition/product to become a regulatory body approved drug (pharmaceutical product) from its initial discovery in the laboratory, to animal and then human trials before being prescribed and sold. 7. the exact contours of experimental remain unspecific, and the notion of experiment is often invoked in journalistic and scholarly accounts alike to mean a range of processes and treatment modalities. for a criti- cal assessment, see bharadwaj (2014). 8. because of the scope of this project, we have also worked with international travellers that would seek out journeys to see the taj mahal or explore the local sights and sounds. however, it became evident that this is more in response to the everyday strain the treatment process puts on them and the caregivers. while, it is beyond the scope of this chapter, we note that it is perhaps important to distinguish between domestic and interna- tional ‘medical migrants’. that is, while some foreign stem cell ‘tourists’ may indeed step out of the hospital to take in the local sights and sounds this is not tourism per se, but rather a deeply human need for distrac- tion, change of context and a coping strategy given the demands placed on their already frail and often times failing bodies. www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 109 9. the affective context of the familial dynamic means people are sel- dom prepared to even contemplate the question of limited resources and whether to allocate them to extend the lives of next of kin. in fact, who and to what extent gets ‘marked’ for therapeutic interven- tion and resource allocation is determined by class and gender dynam- ics in india. it cuts across public private as well as state and domestic distinctions. the scales are vastly different, but not everyone is treated equally. although this chapter is not a conversation on class or gender, both were evident in the everyday therapeutic terrains in india over the course of our fieldwork. 10. he used the word ‘government’ rather than state, so even while para- phrasing, a conscious attempt is made to use his language. references bharadwaj, a. (2008). biosociality and biocrossings: encounters with assisted conception and embryonic stem cell in india. in s. gibbon & c. novas (eds.), biosocialities, genetics and the social sciences: making biologies and identities (pp. 98–116). new york: routledge. bharadwaj, a. (2012). enculturating cells: the anthropology, substance, and science of stem cells. annual review of anthropology, 41, 303–317. bharadwaj, a. (2013a). ethic of consensibility, subaltern ethicality: the clinical application of embryonic stem cells in india. biosocieties, 8, 25–40. bharadwaj, a. (2013b). subaltern biology? local biologies, indian odys- seys, and the pursuit of human embryonic stem cell therapies. medical anthropology, 32, 359–373. bharadwaj, a. (2014). experimental subjectification: the pursuit of human embryonic stem cells in india. ethnos, 79, 84–107. bharadwaj, a., & glasner, p. (2009). local cells, global science: the rise of embryonic stem cell research in india (reprint edition). london: routledge. bochaton, a. (2015). cross-border mobility and social networks: laotians seeking medical treatment along the thai border. social science and medicine, 124, 364–373. bosk, c. l. (1999). professional ethicist available: logical, secular, friendly. daedalus, 128, 47–68. bosk, c. l. (2001). irony, ethnography, and informed consent. in bioethics in social context (pp. 199–220). philadelphia: temple university press.

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110 n.s. appleton and a. bharadwaj cattaneo, e., & corbellini, g. (2014). stem cells: taking a stand against pseu- doscience. nature, 510, 333–335. connell, j. (2015). from medical tourism to transnational health care? an epi- logue for the future. social science and medicine, 124, 398–401. corrigan, o. (2003). empty ethics: the problem with informed consent. sociology of health and illness, 25, 768–792. corrigan, o. (2004). informed consent: the contradictory ethical safeguards in pharmacogenetics. in o. corrigan & r. tutton (eds.), genetic databases: socio ethical issues in the collection and use of dna (pp. 78–96). london: routledge. corrigan, o., mcmillan, j., liddell, k., richards, m., & weijer, c. (eds.). (2009). the limits of consent: a socio-ethical approach to human subject research in medicine. oxford: oxford university press. crush, j., & chikanda, a. (2015). south–south medical tourism and the quest for health in southern africa. social science and medicine, 124, 313– 320. das, v. (1999). public good, ethics, and everyday life: beyond the boundaries of bioethics. daedalus, 128, 99–133. das, v. (2012). ordinary ethics. in d. fassin (ed.), a companion to moral anthropology (pp. 133–149). malden, ma: wiley. faulkner, a., kent, j., geesink, i., & fitzpatrick, d. (2006). purity and the dangers of regenerative medicine: regulatory innovation of human tissue- engineered technology. social science and medicine, 63, 2277–2288. fitzpatrick, d., & griffin, d. (2012). family hangs hope for boy on unproven therapy in india (www document). retrieved august 31, 2016, from http://edition.cnn.com/2012/05/19/health/embryonic-stem-cell-therapy/ index.html. francis fukuyama, y. (2002). our posthuman future : consequences of the bio- technology revolution. london: farrar, straus and giroux. franklin, s. (2006). embryonic economies: the double reproductive value of stem cells. biosocieties, 1, 71–90. franklin, s. (2007). stem cells r us: emergent life forms and the global bio- logical. in a. ong & s. j. collier (eds.), global assemblages (pp. 59–78). malden, ma: blackwell. franklin, s. (2013). biological relatives—ivf, stem cells and the future of kinship. durham, nc: duke university press. ginsburg, f., & rapp, r. (2013). disability worlds. annual review of anthropology, 42, 53–68. www.ebook3000.com

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4 on the everyday ethics of stem cell therapies in india 111 gupta, a. (2012). red tape: bureaucracy, structural violence, and poverty in india/akhil gupta. durham, nc: duke university press. hara, a., sato, d., & sahara, y. (2014). new governmental regulatory system for stem cell-based therapies in japan. therapeutic innovation and regulatory science, 48, 681–688. indian council for medical research. (2013). national guidelines for stem cell research (guideline document). new delhi, india: department of health research and department of biotechnology. inhorn, m. (2015). cosmopolitan conceptions: ivf sojourns in global dubai (1st ed.). durham, nc: duke university press. kasper, h. (in preperation). south–south medical travel: particular challenges and connections of transnational therapeutic itineraries to india. geoforum. kleinman, a. (1995). writing at the margin: discourse between anthropology and medicine. berkeley: university of california press. kleinman, a. (1999). moral experience and ethical reflection: can ethnog- raphy reconcile them? a quandary for “the new bioethics”. daedalus, 128, 69–97. krimsky, s. (2015). stem cell dialogues: a philosophical and scientific inquiry into medical frontiers. new york: columbia university press. lauritzen, p. (2005). stem cells, biotechnology, and human rights: implications for a posthuman future. hastings center report, 35, 25–33. muller, j. h. (1994). anthropology, bioethics, and medicine: a provocative trilogy. medical anthropology quarterly, 8, 448–467. ong, a., & chen, n. n. (eds.). (2010). asian biotech: ethics and communities of fate, experimental futures: technological lives, scientific arts, anthropological voices. durham, nc: duke university press. ormond, m., & sulianti, d. (forthcoming). more than medical tourism: lessons from indonesia and malaysia on south–south intra-regional medi- cal travel. current issues in tourism, 20, 94–110. petersen, a., macgregor, c., & munsie, m. (2016). stem cell miracles or russian roulette? patients’ use of digital media to campaign for access to clinically unproven treatments. health, risk and society, 17(7–8), 592–604. petersen, a., & seear, k. (2011). technologies of hope: techniques of the online advertising of stem cell treatments. new genetics and society, 30, 329–346. salter, b. (2008). governing stem cell science in china and india: emerging economies and the global politics of innovation. new genetics and society, 27, 145–159.

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112 n.s. appleton and a. bharadwaj sheoran, n. (2012). once an insider, always an outsider: (re)negotiating boundaries when researchers return “home” for research. anthropology news, 53. song, p. (2010). biotech pilgrims and the transnational quest for stem cell cures. medical anthropology, 29, 384–402. thompson, c. (2013). good science: the ethical choreography of stem cell research. cambridge, ma: the mit press. tiwari, s. s., & desai, p. n. (2011). stem cell innovation system in india: emerging scenario and future challenges. world journal of science, technology and sustainable development, 8, 1–23. tiwari, s. s., & raman, s. (2014). governing stem cell therapy in india: regulatory vacuum or jurisdictional ambiguity? new genetics and society, 33, 413–433. vertes, a. a., qureshi, n., caplan, a. i., & babiss, l. e. (eds.). (2015). stem cells in regenerative medicine: science, regulation and business strategies. west sussex: wiley. authors’ biography nayantara sheoran appleton is a lecturer in the cultural anthropology pro- gramme at victoria university of wellington, new zealand. her research and teaching interests fall in the fields of anthropology (medical, feminist, and vis- ual), cultural studies, and science and technology studies (sts). her interest in biomedical interventions and burgeoning biotechnologies in contemporary india is reflected in her two key projects. the first of these is on the feminist politics of health and reproduction in liberalising india and second concerns the regulatory and ethical implications of emerging stem cell biotechnologies. aditya bharadwaj is professor of anthropology and sociology of development at the graduate institute of international and development studies, geneva. his principal research interest is in the global spread of new reproductive, genetic, and stem cell biotechnologies. he has published exten- sively in peer-reviewed journals and edited volumes and is the author and co- author of three research monographs: risky relations: family, kinship and the new genetics (berg 2006), local cells, global science: the proliferation of stem cell technologies in india (routledge 2009), and conceptions: infertility and procreative technologies in india (berghahn 2016). www.ebook3000.com

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5 towards an understanding of embryo donation in new zealand: the views of donors and recipients sonja goedeke and ken daniels introduction embryo donation (ed) is the donation of surplus embryos to another infertile couple or persons following in vitro fertilisation (ivf) treat- ment. ed for reproductive purposes has been available in new zealand since 2005, while ed for research purposes remains prohib- ited (advisory committee on assisted reproductive technology 2008). ed for reproductive purposes differs from the donation of organs dis- cussed in other chapters in this collection for a number of reasons. first, the embryo cannot be said to be a human bodily part. rather, it is an entity in its own right with the potential to become a child. second, the embryo has been created by two people contributing their respec- tive gametes, and therefore the decision-making concerning donation s. goedeke (*) auckland university of technology, auckland, new zealand e-mail: sonja.goedeke@aut.ac.nz k. daniels university of canterbury, christchurch, new zealand © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_5 115 www.ebook3000.com

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116 s. goedeke and k. daniels has to be made by those two persons. further, ed is associated with the creation of life rather than the continuance of an existing life. finally, because ed leads to new life, it assumes a cultural and social signifi- cance which has led many jurisdictions to set up regulatory frameworks to manage the practice. management does not therefore rest with the donors and involved professionals, and the major considerations in ed are psychosocial rather than medical or scientific. while the above dif- ferences are significant, it is important to acknowledge that it was devel- opments in science and medicine—particularly ivf, which has allowed the creation of embryos that may be frozen for subsequent use—which has led to the advent of ed. the practice of ed could be said to be an unintended consequence of such developments. as a practice, ed was first reported in australia in 1983 (trounsen et al. 1983) and initially seemed an attractive option for both potential donors and recipients. for donors, ed offers a potential solution to the ‘problem’ of surplus embryos, an opportunity to use (and thus ‘value’) the embryos, and the possibility of helping others with fertility difficul- ties (de lacey 2005, 2007a, b; johnson 2003; kirkman 2003; lyerly et al. 2010; svendsen 2007). for recipients, ed offers an opportunity to have a child in addition to experiencing pregnancy, childbirth and the parenting of a young child, and without the need to go through what is regularly documented in the literature as expensive and physically intru- sive fertility treatment (blyth et al. 2011; check et al. 2004; hill and freeman 2011; keenan et al. 2012). in this chapter, we explore the practice of ed in new zealand and the regulatory framework within which ed occurs. to do so, we draw on the results of a study by the first author, in which 22 donors and 15 recipients were interviewed as to their experiences of ed in the new zealand context. our discussion will focus on the psychosocial dimen- sions of ed, examining how the embryo is viewed, the factors that impact on the donors’ decision-making, and their views concerning the welfare of the child. we posit three notions that emerge from donors’ and recipients’ views regarding ed: seeing it as a form of adoption, as gift-giving and exchange, and as building an extended family. each of these notions positions ed as a relational practice between donor and recipient families and will be discussed using data from the study.

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5 towards an understanding of embryo donation … 117 the new zealand context the fate of cryopreserved embryos that remain following ivf, which are regarded as ‘surplus’ to requirements once a couple or individual have completed their family, gives rise to a consideration of ed. in new zealand, as with the practice elsewhere, ed has the potential to benefit infertile people who could receive a ‘surplus’ embryo. the numbers of embryos in storage are reported to be high, with an estimated 92,540 embryos across australia and new zealand in 2010 (stiel et al. 2010). however, under the new zealand legislation regarding assisted human reproduction, ed was initially seen as an innovative practice (hart act 2004). as a result, it was required that policy guidelines be devel- oped by the government-appointed committee, the advisory committee on assisted human reproduction (acart). after public consultation and government approval, a set of guidelines were agreed upon, and ed began in 2005. the main components of these guidelines are that: 1. the embryos must have been formed from the couple’s own gametes 2. the embryos must be ‘surplus’ to the couple’s needs and remain after they have completed their families 3. the embryos may be used to create full genetic siblings in no more than two families. further, guidelines specify donor identity registration and recommend openness and disclosure, so that donor-conceived offspring may have information about their genetic background. guidelines also stipu- late the need for individual counselling for the donors and recipients, as well as joint counselling in which donors and recipients and their families meet for full implications counselling. counselling addresses both current and longer-term issues that may arise for the offspring and the donor and recipient families (acart 2008). recommendations include information-sharing and open communication between donor and recipient families, making it similar to ‘open’ adoption as it has long been practised in new zealand (lovelock 2010). it will be noted that most of the above guidelines relate to the psychosocial issues arising www.ebook3000.com

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118 s. goedeke and k. daniels in ed, and as such counsellors play a pivotal role in the management of the practice. it is also important to note that these guidelines, and particularly access to information by offspring, have been influenced by the cul- tural context in new zealand. this includes recognition of the impor- tance for the indigenous māori population of genetic connectedness through the concept of whakapapa, ‘a conceptual framework for… considerations of relatedness, personhood and reproduction’ (glover and rousseau 2007: 119). whakapapa establishes and determines an individual’s status within the immediate and wider family and soci- ety (glover and rousseau 2007; lovelock 2010). individual status requires full knowledge of genetic heritage, as the individual is located as the child of two genetic parents and as the offspring of the whānau (extended family), hapū (sub-tribe) and iwi (tribe) (daniels 2004). protection of whakapapa requires that donor offspring have ‘uncon- strained access’ to information identifying genetic parents (daniels and douglas 2008). finally, all ed cases in new zealand need to be approved by the ethics committee for assisted reproductive technologies (ecart), another government-appointed committee. their decision-making is based on the guidelines established by acart. ecart has approved 55 applications between 2006 and mid-2012 and has reported 14 births as a result of ed by mid-2012. the majority of these applica- tions were made by heterosexual couples or individuals, with a minority made by lesbian couples and single women (ecart 2012). note that ed requirements allow lesbian couples to access ed only where both women in the relationship are considered infertile, and single women only if they are infertile. gay men are automatically precluded from ed as it would require a further party (surrogate mother) to be brought into the relationship, and current surrogacy regulations state that ‘at least one (of the intending parents) will be a genetic parent of any resulting child’ (acart 2013: 4). new zealand’s unique situation regarding ed calls for a research framework that includes the views and experiences of ed donors, ed recipients, and clinic counsellors. the views and experiences of the other main party—the offspring—will need to be considered as they

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5 towards an understanding of embryo donation … 119 become old enough to participate in research efforts. as part of the first author’s research (goedeke 2014), interviews were conducted with 22 donors, 15 recipients, and all nine counsellors involved in the facilita- tion of ed in new zealand. one aspect of donors’ and recipients’ expe- riences—namely, the manner in which they invest in, and manage, the significance of the genetic ties between donors and offspring—has been highlighted elsewhere by the authors (goedeke et al. 2015), in addition to a separate discussion of the views and experiences of the counsellors who assume an integral role in the ed process (goedeke et al. 2016). this chapter will provide an overview of some of the key findings of the experiences of donors and recipients, and highlight how ed is thus understood and experienced as a relational practice. views of the embryo and decision-making making decisions about the fate of surplus embryos is a tricky and emotionally laden process, as is widely reported in the international lit- erature (de lacey 2005, 2007a; frith et al. 2011; fuscaldo et al. 2007; hammarberg and tinney 2006; newton et al. 2007; paul et al. 2010; provoost et al. 2011). ed decision-making is frequently linked to the way in which potential donors perceive their embryos. in our new zealand study, donors spoke of the personal value of the embryos, describing them as ‘hard won’, having involved physical, emotional, and financial resources and often having taken a significant time to achieve. they thus had a considerable attachment to their embryos and wanted to see them used and valued in some way. as in several other studies (hammarberg and tinney 2006; laruelle and englert 1995; lyerly et al. 2010; provoost et al. 2011) discarding embryos was regarded as wasteful and almost disrespectful. yet, in the new zealand context, the only options available to those with surplus embryos is to use them themselves, or apply to donate them to others. as donation for research purposes is currently not available in new zealand, it is important to consider what views about the meaning and appropriate use of embryos may implicitly be communicated through regulatory frameworks (de lacey et al. 2010). indeed, the hart act’s www.ebook3000.com

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120 s. goedeke and k. daniels specifications may serve to underscore the integrity of the embryo as created from human gametes and as designated for human reproductive use only. for example, the act prohibits the development of embryos past 14 days and the artificial formation of cloned or hybrid embryos. further, it stipulates that clinics have a ‘duty’ to stop the development of embryos or hybrid embryos, and prohibits the use of embryos for research purposes. legislation and policy also draw on and acknowledge the views of māori, for whom embryos are sacred. research on embryos and embryo disposal are thus issues that need to be carefully considered and managed, following appropriate tikanga (translated to mean cultur- ally safe practices) in order to avoid breaches of tapu (referring to that which is holy or sacred) (thompson 2012). in addition to regarding the embryos as valuable and special, many of the donors in our study already regarded the embryos as children, or in terms of their potential for life. thus, the thought of discard- ing the embryos was morally uncomfortable. similar findings have been reported in other studies (de lacey 2007a; fuscaldo et al. 2007; o’brien 2010; söderström-anttila et al. 2001). paradoxically, how- ever, studies have suggested that the perception of embryos as children can cause donation to be both promoted and inhibited. it is sug- gested that donation may be promoted because discarding is regarded as akin to ending a life, or inhibited because views of embryos as chil- dren may evoke concerns about the future welfare of these children— children that donors will not be able to parent (de lacey 2007a; frith et al. 2011; melamed et al. 2009; paul et al. 2010; provoost et al. 2009; söderström-anttila et al. 2001). in our study, donors similarly expressed concern about the welfare of the children that would result from ed. indeed, their concern for the welfare of the child was heightened, because many donors regarded the embryo as not just a child, but as their child, or as a child that was still in some way part of their family. the embryos were seen as the crea- tion of the ‘couple unit’, made with the express intent of being part of their family, and as their genetic embodiment. furthermore, the chil- dren resulting from ed were described by donors as their existing chil- dren’s full siblings, even twins, since in many instances their children had been conceived from the same batch as the frozen embryos. these

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5 towards an understanding of embryo donation … 121 genetic connections between donors, their children, and the donor-con- ceived child were regarded as bestowing immutable social connections that needed to be recognised. further, genetic knowledge was regarded as important in terms of developing a healthy sense of identity and to promote psychological well-being. while donors were very clear that the donor-conceived child was not their child, and that they assumed no legal parenting rights, most still reported a sense of responsibility towards and interest in the child. this makes donation a relational or social practice. roberts reasons that donation to others is facilitated by constructs of the embryo that relate to ‘life ethics’ (potential child or life) in which the embryos are ‘stripped of social ties’, and thus ‘may circulate to other families or to research and become valuable either way’ (cited in svendsen 2007: 31). in contrast, when embryos are framed in terms of ‘kin ethics’, donation becomes problematic. it is interesting, then, that our research in new zealand suggests that ed occurs within the lat- ter context of ‘kin ethics’: new zealand’s legislative framework gives significance to genetic connections by acknowledging the importance of whakapapa and our study on donors’ understandings suggests that offspring are still being regarded as, in a sense, the donors’ child. as dis- cussed in the next section, donors are able to proceed with donation from this position, but also within the context of seeing ed as a form of adoption as it is practised in new zealand. embryo donation and the ‘open’ adoption metaphor while much has been made of the relationship between views of the embryo and decision-making, some authors such as de lacey (2005) have suggested that the metaphors that donors and recipients draw on in relation to ed as a practice may be more significant in decisions about ed. two predominant metaphors have been identified: a ‘dona- tion metaphor’, where ed is regarded as akin to gamete and organ donation, and an ‘adoption metaphor’, where ed is seen as similar to the relinquishment of a child by birth parents. www.ebook3000.com

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122 s. goedeke and k. daniels when ed is seen as donation, brakman (2007) suggests that a clinical, almost distant stance towards ed may be enabled, arguably resulting in fewer emotional responses (anderson 2006). rather than calling to mind the adoption of a child, donation ‘implies a more sci- entific or technical process’ (anderson 2006: 620). it may more easily be regarded as a ‘once-off’ event, limited to providing biological mate- rial to assist others in having a child, and without longer-term conse- quences or responsibilities. indeed, some studies (e.g. de lacey 2007a, maccallum et al. 2007; maccallum and keeley 2012) confirm that donors who decide in favour of ed frame the process as akin to organ or tissue donation. further, they suggest that recipients see ed as a one- off event, with few recipients thinking about the donors or planning on disclosing the manner of conception to their children. notwithstanding this comparison, shaw’s (2008, 2010, 2012) work on organ and tissue donation suggests that a description of donation as ‘clinical’ or ‘distant’ radically underestimates the emotional investment that some gamete donors, deceased organ donor families, and living organ donors make in their donative acts. indeed, shaw (2012) describes how donors and recipients are brought into a moral and social relationship through the act of donation. this may evoke anxiety and ambivalence, as well as concerns around shared corporeality and the effect of integrating anoth- er’s body parts into one’s sense of identity. others have suggested that ed entails more complex issues and stronger welfare concerns than are implied in other forms of reproduc- tive donation, due to the fact that ed involves the donation of genetic material by the donor couple, and results in offspring who have genetic parents and full siblings in another family. the recipient couple, unlike those involved in gamete donation, make no contribution to the genetic background of the child (eydoux et al. 2004; helm 2008). indeed, brakman (2007: 202) argues that because a child of a couple is created through ed, ‘no such prior interest in genetic material exists for any other art and certainly does not exist for those who donate gametes under the intention to never parent the children that may come into existence as a result of their actions’. instead, such authors argue that the successful outcome of an ed—the raising of a child by parents who have no genetic relationship to the child, and who may have full genetic

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5 towards an understanding of embryo donation … 123 siblings being raised in another family by their shared genetic parents— has many parallels to traditional adoption, with manning (2004: 718) describing it as ‘the social equivalent’. it is interesting that, in some texts, ed is directly referred to as ‘embryo adoption’, ‘very early adoption’, or ‘pre-birth adoption’. such terms may trace their origins to a californian infant adoption agency: nightlight christian adoptions, which in 1997 established its ‘snowflakes embryo adoption program’. the key elements of the snowflakes model bear a strong resemblance to adoption programmes, including the completion of home studies for prospective recipients and the possibility of information exchange between donors and recipients (blyth et al. 2011). having said that, research documenting the influ- ence of adoption metaphors on the uptake of ed has been contradic- tory. newton et al. (2003) and collard and kashmeri (2011) report that where participants held views congruent with a model of ea, they were more likely to donate. in newton et al. (2003) study, those that were willing to contemplate donation did not see the act as an anony- mous, disinterested gift, but wanted to be part of the child’s life by pro- viding information and being open to possible future contact. on the other hand, de lacey (2007a) reports that it was the ‘discard group’ in her study that related most strongly to the adoption meta- phor. in other words, it appears that those who regarded ed as adop- tion rejected it as an option. seeing the embryos as biologically bonded by genetics to their organic family unit, and as genetic replica of their existing children, meant that they were unable to donate them. the lack of knowledge about where their children were, the inability to ensure their well-being, and concerns about future contact affected their rejec- tion of ed (de lacey 2005). in contrast, de lacey’s ‘donate group’ drew on, but ultimately resisted, the adoption metaphor. they described ‘how it did not fit’ (de lacey 2007a: 1754), emphasising the gestational experience as impor- tant. while this group did not deny the genetic link, they minimised it, reducing it to a ‘mere biological fact’. instead, they saw gestation, birth, and the raising of the child as more important for the establishment of connections between the future child and the recipients, and the recipi- ents’ ‘ownership’ of the child (de lacey 2007a). note, however, that www.ebook3000.com

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124 s. goedeke and k. daniels the donations took place prior to changes in south australia requiring identity disclosure, which may be a relevant factor in acceptance of, or resistance to, the adoption metaphor. indeed, the perceived similarity of donation to closed adoption concerned participants in de lacey’s (2005) study, and they reported that they would always be worrying where the child was and about his or her well-being. it could be argued that when ed can be positioned as a relational practice, as may be the case in open arrangements, and not as one-off event in which social ties between offspring and donors are broken, it becomes more feasible. this appeared to be the case in our study, where both donors and recipients resisted a donation metaphor. instead, they drew com- parisons between ed and adoption. many referred to ed directly as embryo adoption, or as ‘one step removed from adoption’. they con- structed parallels with adoption as it is practised in new zealand, where the birth parent chooses the profile of adoptive parents, openness is encouraged, and there is oversight by a government agency. such prac- tices underscored their perceptions of ed as adoption. this included the practice of donors selecting recipients’ profiles, the openness and disclosure encouraged, and the perceived oversight by a government- appointed body (ecart). the counselling required, which involved consideration of similar issues to those confronted by birth and adop- tive parents, further reinforced the perceived similarity. as one counsel- lor pointed out, the process in new zealand tends to treat ed as akin to adoption, which may then shape people’s perceptions. however, rather than inhibiting donation, as has been suggested in some studies (e.g. de lacey 2007a), for donors in our study the adop- tion metaphor provided a familiar and acceptable model for ed. this may be because in the new zealand legislative context of disclosure and donor registration, ed is constructed as open adoption, which allows the possibility of information about and contact with the donor-con- ceived child. indeed, lovelock (2010) suggests that open adoption practices have served as important antecedents for ed in new zealand. donors in this study were clear that they would not have donated anon- ymously. the parallels they drew with open adoption in new zealand made it more possible to donate embryos that would still be in some way ‘their’ children.

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5 towards an understanding of embryo donation … 125 however, while drawing on an adoption metaphor to make sense of ed, the majority of donors regarded ed as easier than adoption. this was because it involved the donation of an embryo, not a child. donors expressed that the lack of a gestational relationship between themselves and the child created a feeling of distance; it made donation less chal- lenging than relinquishing a child that a donor had gestated and given birth to. where donors felt they had completed their families, they tended to regard the embryos as ones they themselves would not use. instead, from an empowered position, they could donate to help other individuals have families. however, by seeing ed as adoption, the future implications of their decision to donate: that there would be a child born who was ‘geneti- cally theirs’ and yet that they would not parent, were made transpar- ent. this comparison also complicated the decision for some donors. it reinforced their viewpoint of the embryos as their children, rather than as cells or biological resources that others could use to have chil- dren. where donors had struggled with the concept of donating their embryos, some also compared themselves with birth parents. they saw themselves as similarly disempowered and faced with no alternatives but to donate by virtue of their circumstances (e.g. physically unable to carry a future pregnancy). in such cases, the donation was made with a degree of ambivalence. further, for some donors the comparison with adoption highlighted differences between the two practices which were of potential concern. first, donors pointed out that adoption involved a thorough assess- ment of the recipients’ ability to parent, which was not the case in ed, where screening is limited to medical assessments and police checks. the current emphasis in new zealand policy is on a balancing of indi- vidual (adult) rights and the rights of the (future) child, where both are given important consideration (angus 2012). since in ed there is not yet a child to protect, some authors (anderson 2006; de lacey 2010) have suggested that assessment may be seen as unnecessary, as well as an infringement of reproductive rights and individual choice. several donors in our study stated that they would welcome formal assessment of parenting suitability, however, as is the case in adoption. while they recognised that they were donating embryos and not placing children www.ebook3000.com

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126 s. goedeke and k. daniels for adoption, many regarded ed as the functional equivalent of adop- tion. their sense was that if this measure was introduced then they would feel that they had met their responsibility towards the future child. in 2006, the new zealand government declined a recommenda- tion by the law commission (2005) to impose mandatory screening for parents having a child through ed, commenting that it was prema- ture to do so (ministry of justice 2006). these recommendations may need to be revisited. second, several donors assumed that adopted children in new zealand had greater ability to access information about their birth parents than donor offspring had to access their genetic information. this may not nec- essarily be the case, as while open adoption is practised in new zealand, adopted children also do not automatically have the fact of the adoption recorded on their birth certificate. for donors in our study it was impor- tant that children would be able to access their genetic knowledge. while identifying information about the donors is recorded in new zealand, and donor-conceived offspring can access this information at the age of 18 years or earlier upon application by the parents, there is no obligation for recipient parents to disclose the nature of conception to their children. as has been pointed out by several authors (e.g. hammarberg et al. 2011; helm 2008), disclosure rests on the moral obligation of the recipients. donor-conceived offspring can access information only if they have been informed that they are donor-conceived. while recipients in this study had told or were planning to tell their children of the donor conception, and while most of the donors trusted that recipients would follow through with these intentions, they were aware of their limited rights in ensuring disclosure and acknowledged that relationships could change over time. several donors would welcome the implementation of measures such as birth certificate annotation as additional measures to ensure that recipients inform their children of the means of their conception. this has been the case in victoria, australia (hammarberg et al. 2011). in 2005, the new zealand law commission recommended that birth certificate annota- tion be considered. however, government response, while acknowledging the need to give consideration to such issues, was negative (ministry of justice 2006). some commentators have suggested that legislation would constitute an intrusion into individual choices and privacy, and would not

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5 towards an understanding of embryo donation … 127 necessarily translate into greater numbers of recipients telling their chil- dren. on the other hand, there is an inherent contradiction in asserting the psychosocial importance of genealogy, and the rights of offspring to access their genetic knowledge, in the absence of mechanisms to ensure that this occurs (allan 2010). recipients likewise drew strong parallels with adoption, which helped them to make sense of ed and enabled it as a family-building option, a finding also reported in collard and kashmeri’s (2011) study. several made reference to their familiarity with adoption in the new zealand context, or discussed their experiences of adoption courses and their counsellors’ support of these courses. the adoption metaphor provided a way for recipients to accept the parenting of a non-genetic child and for asserting the social role in parenting. at the same time, recipients acknowledged the importance of openness and the needs and rights of their children to have access to their genetic knowledge. in this way, they too regarded ed as a relational practice. while recipients clearly saw the children as theirs, they also made reference to their children’s ‘other family’. for recipients, however, the metaphor was also one of ‘adoption with benefits’, including advantages referenced in other research, such as fewer bureaucratic processes, the opportunity to experience pregnancy, childbirth, and parenting from birth, as well as the ability to appear more like ‘other’ families (blyth et al. 2011; check et al. 2004; hill and freeman 2011; johnson 2003; keenan et al. 2012). recipients placed a great deal of value on the role of gestation in promoting attachment and bonding [as was the case in maccallum (2009) and as reported by maccallum and widdows (2012)]. they also saw gestation as a way to have input into the child’s prenatal development, even potentially affecting genetic makeup. hargreaves (2006) has observed that physical resemblance between child and parents locates a child as part of a kin group. by seeing gestation as influencing genetic makeup and thus the manifest characteristics of the child, recipients were able to further draw the offspring into the recipient family. further, while recipients referred to characteristics that the child shared with donors, as was the case in kirkman’s (2008) study, recipients tended to relegate these to the back- ground, or reinterpreted the break in genetic continuity, formulating it www.ebook3000.com

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128 s. goedeke and k. daniels as advantageous that the child would avoid inheriting their undesirable characteristics (e.g. ‘they won’t inherit my bad teeth!’). in this way, recipients drew on an adoption metaphor as a naturalis- ing strategy, providing a framework for family-building, and simultane- ously diluted the strength of the genetic tie, drawing on the gestational ties to make the child ‘more their own’, and themselves as ‘more the par- ents’ than is the case in adoption. these findings have many parallels with those of kirkman (2008), who reported that egg recipients tend to minimise the role of genetics and claim maternity through gestation. the fact that in new zealand, it is the birth mother who is regarded as the legal mother, was also an added advantage for recipients. some recipients also drew positive parallels between themselves and adoptive parents, seeing themselves as in a position of power and simi- larly offering a child a home. for some, receiving an embryo also meant that they were helping donors who were faced with a dilemma of what to do with their embryos. however, others pointed to the perceived difference between their donors’ position and that of birth parents. birth parents were seen as compelled to offer their children for adop- tion because of necessity; donors were not compelled to donate their embryos, but did so out of kindness. this is related to a further theme identified in this study: that of ed as a form of gift-giving versus a prac- tice of mutual exchange. embryo donation as gift-giving or a form of mutual exchange both donors and recipients resisted viewpoints of the embryos as property that could be owned and transferred, and instead regarded the embryos as having special status. they also viewed ed as a form of gifting. as in other studies (e.g. de lacey 2005, 2007b; kirkman 2003; lyerly et al. 2010; svendsen 2007), many regarded ed as an act motivated by altruism and a desire to help others enjoy the benefits of having children. in this way, donors were portrayed as benevolent benefactors. riggs and scholz (2011), writing about sperm donation

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5 towards an understanding of embryo donation … 129 in australia, have argued that while in western societies a number of meanings may be ascribed to sperm, in the context of assisted repro- duction sperm have increasingly been treated as alienable commodities. however, by positioning donors as benevolent, donors are given a posi- tive identity as persons, not just as providers of a commodity. further, by seeing the donation as a form of gift-giving rather than a transaction that could be completed, the idea of donors as ‘faceless’ people that could be kept at a distance was negated. instead, the gifting metaphor rendered the donors visible, and located donors and recipi- ents within a giving-receiving-and-reciprocating dynamic, where gifts serve to establish ongoing reciprocity relations between donors and recipients (shaw 2008, 2010, 2012). this again positions ed as a rela- tional practice. for example, while recipients described the donors’ act as generous, kind-hearted, and motivated by selflessness, several described feeling not only grateful, but also indebted to the donors. similar findings have been reported in relation to sperm donation (daniels and lewis 1996). while donors were very clear that they did not expect any financial compensation for the donation, several regarded the gift-giving as posi- tioning the recipients as indebted to the donors. there was an expecta- tion, for example, that recipients would acknowledge the ‘gift’ they had been given by respecting the information-exchange and contact arrange- ments that had been negotiated. a few donors and recipients also felt that, in recognition of the donors’ act, the recipients could offer to assume the costs associated with ed (including the donors’ counselling and legal fees). some recipients were initially concerned that their feelings of indebt- edness would lead them to accept a greater degree of involvement from the donors than they were comfortable with, but these fears tended to diminish over time. further, several donors distanced themselves from a need to be reciprocated for the donation. instead, they regarded themselves as donating out of a sense of gratitude for the gift they had received: the gift of children. these donors had fewer expectations of acknowledgement. other donors and recipients regarded ed as prac- tice that was mutually beneficial: allowing donors to achieve a solution to their dilemma (of having precious surplus embryos that they did www.ebook3000.com

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130 s. goedeke and k. daniels not wish to discard), and recipients the opportunity to attempt to have children. applegarth (2006), drawing on social exchange theory, like- wise suggests that ed may be regarded as a relationship of reciprocal social exchange where both parties benefit. such views potentially offer a greater balance of power between donors and recipients, with fewer obligations and counter-obligations evoked. indeed, in this study, sev- eral donors and recipients saw themselves as working together towards shared goals of finding solutions for embryos, as well as family-building. while drawing distinctions between the embryos and cells or prop- erty, several donors and recipients also emphasised that embryos, by their biological and genetic nature, could not be considered entities that were separable from the people who created them. as shaw (2007, 2008) argues, the gifting of bodily donor material is complex because it may be seen as inalienable. she suggests that in the context of organ donation, bodily material is not thought of as property. even if an organ is ‘given away’, it remains connected to the donor, whose subjectivity lives on through the donated material in some way. the donated organ is more than a gift. similarly, in this study embryos were seen as entities that could not, in the traditional sense of the word, be gifted—just as they could also not be ‘owned’. instead, embryos were seen as biological material that, by virtue of their origin from the donors, and particularly by virtue of the embryos’ nature as genetic blueprints, could never be entirely separated from their progenitors. again, this concept was drawn on by both donors and recipients to regard ed as a joint way of valuing biological genetic material, as well as building extended families, as is discussed next. ed as building extended families while donors were clear that they were not the child’s parents, they used family terms or roles, such as aunts, uncles, in-laws and godparents, to describe their relationship to the child. however, the children in the two families (donor and recipient) were frequently referred to directly as (full) brothers and sisters. most recipients similarly drew on such terms to describe the donors’ role and relationship to their child/ren. using

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5 towards an understanding of embryo donation … 131 family terms to describe the donors’ role in relation to the child was not regarded as threatening, as their position was likened to that of extended family. by describing the donors as extended family, both donors and recipi- ents could assume comfortable positions in relation to each other and the child. while, as hargreaves (2006) observes, relatives may be seen to have a claim on one another by virtue of genetic makeup, these claims were circumscribed by the designation of the relationship as one of ‘extended family’. seeing the other party as extended family allowed them to express interests in each other’s well-being and created the pos- sibility for contact. at the same time, the construct bestowed no legal rights or authority in relation to each other. for example, donors could maintain a degree of interest in the child’s life, and possibly have some degree of involvement, but as in many extended families this involve- ment would be peripheral. recipients could assume full parenting authority over their children, but involve and draw on the donors (as extended family) as they deemed appropriate. indeed, in some cases donors and recipients met regularly and drew on each other for sup- port (e.g. potential support in the pregnancy journey, parenting advice). contact was portrayed as positive for the children, as well as reassuring for adults. it was presented as non-interfering and not necessarily fre- quent, with several donors and recipients using a range of social media (e.g. facebook, email) and contact arrangements (e.g. meeting for sig- nificant family occasions such as birthdays.) regarding ed as building extended families also allowed the children in the two families to have the potential for contact, and to ‘activate’ their relationship. as in blyth’s (2012) study, siblings were constructed as a protective band that could offer each other support. for some, it was important that siblings developed these supportive relationships from an early age. others, as in collard and kashmeri’s (2011) study, were comfortable with activating contact later. in some cases, both donors and recipients were comfortable with leaving this decision to the children and expressed willingness for the children to build relationships if and when they desired. for both parties, the conceptualisation of ed as extended family- building offered a way to make sense of ed and of the relationships www.ebook3000.com

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132 s. goedeke and k. daniels between the two families. the construct allowed an acknowledgement of the connections between the two families, but did not involve any particular rights or obligations. many donors and recipients regarded each other as connected ‘forever’. for some, this occurred even when the ed had not resulted in a child. these donors and recipients remained in touch and in some instances continued to offer each other support in their family-building efforts. glover (2008) points to the similarity between ed and the māori practice of whāngai, an informal ‘adoption’ practice in which birth par- ents may place children with whānau for reasons including the recipi- ents’ infertility, or because the birth parents are unable to raise the child. whāngai children know about their birth parents and are able to have contact with them. this enables them to recount their whakapapa and to answer ‘ko wai koe?’ (who are you?) (glover 2008: 56). placements are arranged to secure and strengthen whānau and kin links (mcrae and nikora 2006). glover (2008) suggests that new zealand’s model of ‘open’ ed could be seen as ‘early whāngai’, in that a genetic child is raised by another family, but in the context of openness and acknowl- edgement of kinship ties—although in whāngai the placement is with extended family members. conclusion in sum, ed offers a potential solution for couples needing to make deci- sions about the disposal of embryos that remain following their ivf and the ‘completion’ of their families. for the recipients of ed, ed offers a way of building a family in circumstances where this would other- wise not have been possible. however, ed is a unique form of biologi- cal donation, as it results in the creation of new life: the genetic child of the donors. this fact, and the value that is accorded genetic ties and knowledge in the new zealand context, positions ed as a relational practice between donor and recipient families. children cannot be ‘donated’ or transferred to others as ‘property’, and embryos which are expressly created with the intent to parent and as the full genetic embod- iment of a couple may be seen as inalienable from their progenitors.

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5 towards an understanding of embryo donation … 133 thus, the donors and offspring, and by implication the recipient fam- ily, have ongoing social ties and connections to each other, akin to those in ‘open’ adoption arrangements. further, the donation is relational in the sense that ed is frequently regarded as a form of gift-giving, which may establish a social relationship of gifting-receiving-and-reciprocating between donor and recipient families. finally, by portraying each other as extended family members, donor and recipient families are brought into a relationship with each other that enables connection and involve- ment, while recognising the parental autonomy of the recipients. the psychosocial aspects of ed are thus significant, making ed a challeng- ing option which results in new forms of relationships that may evolve over time in unpredictable ways. both donors and recipients have to negotiate a path that few have undertaken, and have to work out ways in which to donate embryos and build families that combine and sepa- rate the genetic, biological, and social aspects of parenting and human reproduction. new zealand has developed a unique way of doing this. by recognising the significance of the psychosocial issues, and through the experiences and perspectives of the donors and recipients, we have a view of how these issues are managed. however, there is a continu- ing need to ensure that appropriate measures are in place to safeguard the interests and needs of all parties, and especially those of the chil- dren involved. this includes giving further consideration to implement- ing mechanisms by which offspring may access information about their genetic origins, more formal assessment of prospective donors and recip- ients, and the establishment of ongoing support mechanisms for families built in this manner. references advisory committee on assisted reproductive technology (acart). (2008). guidelines on embryo donation for reproductive purposes. retrieved from www.acart.health.govt.nz/publications-and-resources/guidelines-and-advice- issued-ecart/guidelines-embryo-donation. advisory committee on assisted reproductive technology (acart). (2013). guidelines on surrogacy involving reproductive purposes. retrieved from www.ebook3000.com

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134 s. goedeke and k. daniels http://acart.health.govt.nz/publications-and-resources/guidelines-and- advice-issued-ecart/guidelines-surrogacy-arrangements. allan, s. (2010). submission to the senate committee inquiry into donor con- ception, access to genetic information and donor identification. retrieved from http://hdl.handle.net/10536/dro/du:30034784. anderson, m. l. (2006). are you my mommy?—a call for regulation of embryo donation. capital university law review, 35, 589–627. angus, j. (2012, october). what can be done with the bits of your bits: regulating assisted reproductive technologies treatments. paper presented at the fertility society australasia annual conference, auckland, nz. applegarth, l. d. (2006). embryo donation: counselling donors and recipi- ents. in s. n. covington & l. hammerburns (eds.), infertility counselling: a comprehensive handbook for clinicians (2nd ed., pp. 356–369). cambridge, england: cambridge university press. blyth, e., frith, l., paul, m. s., & berger, r. (2011). embryo relinquishment for family building: how should it be conceptualised? international journal of law, policy and the family, 25(2), 260–285. blyth, e. (2012). genes r us? making sense of genetic and non-genetic kin- ship relationships following anonymous sperm donation. reproductive biomedicine online, 24, 719–726. brakman, s.-v. (2007). paradigms, practices and politics: ethics and the lan- guage of human embryo transfer/donation/rescue/adoption. in m. j. cherry & a. s. iltis (eds.), pluralistic casuistry moral arguments, economic realities, and political theory, dordrecht (pp. 191–210). the netherlands: springer. check, j. h., wilson, c., krotec, j. w., choe, j. k., & nazari, a. (2004). the feasibility of embryo donation. fertility and sterility, 81(2), 452–453. collard, c., & kashmeri, s. (2011). embryo adoption: emergent forms of siblingship among snowflakes® families. american ethnologist, 38(2), 307– 322. daniels, k. (2004). new zealand: from secrecy and shame to openness and acceptance. in e. blyth & r. landau (eds.), third party assisted conception across cultures: social, legal and ethical perspectives. london: jessica kingsley publishers. daniels, k. r., & douglass, a. (2008). access to genetic information by donor offspring and donors: medicine, policy and law in new zealand. medicine and law, 27, 131–146.

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5 towards an understanding of embryo donation … 135 daniels, k. r., & lewis, g. m. (1996). donor insemination: the gifting and selling of semen. social science and medicine, 42(11), 1521–1536. de lacey, s. (2005). parent identity and “virtual” children: why patients dis- card rather than donate unused embryos. human reproduction, 20(6), 1661–1669. de lacey, s. (2007a). decisions for the fate of frozen embryos: fresh insights into patients’ thinking and their rationales for donating or discarding embryos. human reproduction, 22(6), 1751–1758. de lacey, s. (2007b). patients’ attitudes to their embryos and their des- tiny: social conditioning? best practice & research clinical obstetrics and gynaecology, 21(1), 101–112. de lacey, s., rogers, w., & richards, b. (2010). directed embryo donation: free choice or discrimination? journal of law and medicine, 18(1), 169– 177. ethics committee on assisted reproductive technology (ecart). (2012). annual report 2011–2012, wellington: ecart. retrieved from www. ecart.health.govt.nz/publications-and-resources/annual-reports. eydoux, p., thepot, f., fellmann, f., francannet, c., simon-bouy, b., jouannet, p., et al. (2004). how can the genetic risks of embryo dona- tion be minimized? proposed guidelines of the french federation of cecos (centre d’etude et de conservation des oeufs et du sperme). human reproduction, 19(8), 1685–1688. doi:10.1093/humrep/ deh328. frith, l., blyth, e., paul, m. s., & berger, r. (2011). conditional embryo relinquishment: choosing to relinquish embryos for family-building through a christian embryo ‘adoption’ programme. human reproduction, 26(12), 3327–3338. fuscaldo, g., russell, s., & gillam, l. (2007). how to facilitate decisions about surplus embryos: patients’ views. human reproduction, 22(12), 3129–3138. goedeke, s. (2014). understandings and experiences of embryo donation in new zealand, unpublished ph.d. dissertation. auckland, auckland university of technology. goedeke, s., daniels, k., & thorpe, m. (2016). embryo donation and coun- selling for the welfare of donors, recipients, their families and children. human reproduction, 31(2), 412–417. www.ebook3000.com

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136 s. goedeke and k. daniels goedeke, s., daniels, k., thorpe, m., & du preez, e. (2015). building extended families through embryo donation: the experiences of donors and recipients. human reproduction, 30, 2340–2350. glover, m. (2008). māori attitudes to assisted human reproductive technology: an exploratory study. auckland: university of auckland school of population health. glover, m., & rousseau, b. (2007). ‘your child is your whakapapa’: māori considerations of assisted human reproduction and relatedness. sites: new series, 4(2), 117–135. hammarberg, k., & tinney, l. (2006). deciding the fate of supernumerary frozen embryos: a survey of couples’ decisions and the factors influencing their choice. fertility and sterility. doi:10.1016/j.fertnstert.2005.11.071. hammarberg, k., johnson, l., & petrillo, t. (2011). gamete and embryo donation and surrogacy in australia: the social context and regulatory framework. international journal of fertility & sterility, 4(4), 176–183. hargreaves, k. (2006). constructing families and kinship through donor insemination. sociology of health & illness, 28(3), 261–283. helm, c. (2008). embryo donation: adoption in disguise? locating embryo dona- tion within the adoption and assisted reproductive technology frameworks. unpublished honours dissertation, university of otago, dunedin, nz. hill, g. a., & freeman, m. r. (2011). embryo disposition: choices made by patients and donor oocyte recipients. fertility and sterility, 95(3), 940–943. human assisted reproductive technology act. (2004). johnson, n. d. (2003). excess embryos: is embryo adoption a new solution or a temporary fix? brooklyn law review, 68, 853–883. keenan, j. a., gissler, m., & finger, r. (2012). assisted reproduction using donated embryos: outcomes from surveillance systems in six countries. human reproduction, 27(3), 747–752. kirkman, m. (2003). egg and embryo donation and the meaning of mother- hood. women and health, 38(2), 1–18. kirkman, m. (2008). being a “real” mum: motherhood through donated eggs and embryos. women’s studies international forum, 31, 241–248. laruelle, c., & englert, y. (1995). psychological study of in vitro fertilization- embryo transfer participants’ attitudes toward the destiny of their supernu- merary embryos. fertility and sterility, 65(1), 205–206. lovelock, k. (2010). conceiving reproduction: new reproductive technolo- gies and the redefinition of the kinship narrative in new zealand society.

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5 towards an understanding of embryo donation … 137 anthropological forum: a journal of social anthropology and comparative sociology, 20(2), 125–146. lyerly, a. d., steinhauser, k., voils, c., namey, e., alexander, c., bankowski, b., et al. (2010). fertility patients’ views about frozen embryo disposition: results of a multi-institutional u.s. survey. fertility and sterility, 93(2), 499–509. maccallum, f. (2009). embryo donation parents’ attitudes towards donors: comparison with adoption. human reproduction, 24(3), 517–523. maccallum, f., golombok, s., & brinsden, p. r. (2007). parenting and child development in families with a child conceived through embryo donation. journal of family psychology, 21(2), 278–287. maccallum, f., & keeley, s. (2012). disclosure patterns of embryo dona- tion mothers compared with adoption and ivf. reproductive biomedicine online, 24(7), 745–748. maccallum, f., & widdows, h. (2012). ethical issues in embryo donation. in m. richards, g. pennings, & j. b. appleby (eds.), reproductive dona- tion: practice, policy and bioethics (pp. 270–288). cambridge: cambridge university press. manning, p. j. (2004). baby needs a new set of rules: using adoption doctrine to regulate embryo donation. georgetown journal of gender and the law, 5(2), 677–721. mcrae, k., & nikora, l. (2006). whangai: remembering, understanding and experiencing. mai review. retrieved from http://www.review.mai.ac.nz . melamed, r. m., de sousa bonetti, t. c., braga, d. p., madaschi, c., iaconelli, a., & borges, e. (2009). deciding the fate of supernumerary fro- zen embryos: parents’ choices. human fertility, 12(4), 185–190. new zealand law commission. (2005). new issues in legal parent- hood, wellington: new zealand law commission. retrieved from http://www.lawcom.govt.nz/sites/default/files/publications/2005/04/ publication_91_315_r88.pdf. new zealand ministry of justice. (2006, march). government response to law commission report on new issues in legal parenthood. retrieved from www.justice.govt.nz/publications/global-publications/g/. newton, c. r., fisher, j. r. w., feyles, v., tekpetey, f., hughes, l., & isacsson, d. (2007). changes in patient preferences in the disposal of cryo- preserved embryos. human reproduction, 22(12), 3124–3128. www.ebook3000.com

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138 s. goedeke and k. daniels newton, c. r., mcdermid, a., tekpetey, f., & tummon, i. s. (2003). embryo donation: attitudes toward donation procedures and factors pre- dicting willingness to donate. human reproduction, 18(4), 878–884. o’brien, m. (2010). intersection of ethics and law: the frozen embryo dilemma and the chilling choice between life and death. whittier law review, 32, 171–196. paul, m. s., berger, r., blyth, e., & frith, l. (2010). relinquishing frozen embryos for conception by infertile couples. families, systems, & health, 28(3), 258–273. provoost, v., pennings, g., de sutter, p., gerris, j., van de velde, a., de lissnyder, e., et al. (2009). infertility patients’ beliefs about their embryos and their disposition preferences. human reproduction, 24(4), 896–905. provoost, v., pennings, g., de sutter, p., gerris, j., van de velde, a., & dhont, m. (2011). to continue or discontinue storage of cryopre- served embryos? patients’ decisions in view of their child wish. human reproduction, 26(4), 861–872. riggs, d. w., & scholz, b. (2011). the value and meaning attached to genetic relatedness among australian sperm donors. new genetics and society, 30(1), 41–58. shaw, r. (2007). the gift-exchange and reciprocity of women in donor- assisted conception. the sociological review, 55(2), 293–310. shaw, r. (2008). rethinking reproductive gifts as bodily projects. sociology, 42(1), 11–28. shaw, r. (2010). perceptions of the gift relationship in organ and tissue dona- tion: views of intensivists and donor and recipient coordinators. social science and medicine, 70, 609–615. shaw, r. (2012). thanking and reciprocating under the new zealand organ donation system. health, 16(3), 298–313. söderström-anttila, v., foudila, t., ripatti, u.-r., & siegberg, r. (2001). embryo donation: outcome and attitudes among embryo donors and recipients. human reproduction, 16(6), 1120–1128. doi:10.1093/hum- rep/16.6.1120. stiel, m., mcmahon, c. a., elwyn, g., & boivin, j. (2010). pre-birth charac- teristics and 5-year follow-up of women with cryopreserved embryos after successful in vitro fertilisation treatment. journal of psychosomatic obstetrics and gynecology, 31(1), 32–39.

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5 towards an understanding of embryo donation … 139 svendsen, m. n. (2007). between reproductive and regenerative medicine: practising embryo donation and civil responsibility in denmark. body & society, 13(4), 21–45. thompson, r. (2012, october). (comment) panel of experienced infertility counsellors, lawyers and others discuss pre-selected questions and dilem- mas. symposium conducted at the australian and new zealand infertility counsellors’ association (anzica) workshop, auckland, nz. trounsen, a., leeton, j., besanka, m., wood, c., & conti, a. (1983). pregnancy established in an infertile patient after transfer of a donated embryo fertilised in vitro. british medical journal, 286(6368), 835–838. authors’ biography sonja goedeke is a senior lecturer at auckland university of technology, new zealand. sonja’s research interests focus on infertility and the psychoso- cial and ethical implications of assisted reproductive technologies; in particu- lar, reproductive donation. sonja has published on embryo donation, donation counselling, decision-making, media representations, “mild” ivf, and cross- border reproductive care. ken daniels is adjunct professor at the university of canterbury. he has been working in the field of assisted human reproduction, with a particular focus on donor insemination, for over 40 years. he has provided counselling for parents and families, provided seminars for consumer groups and academic audiences, acted as a policy consultant for several countries, and published extensively in the field. ken was deputy chair of the advisory committee on assisted human reproduction in new zealand for seven years. he was made an officer of the new zealand order of merit (onzm) in 2014 in recogni- tion of his work in reproductive technology and mental health. www.ebook3000.com

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6 ethics for embryologists ruth p. fitzgerald and michael legge introduction this chapter presents findings from a wider project exploring the chal- lenges for biological scientists of incorporating the additional role of healthcare worker into their professional identities (fitzgerald et al. 2013b). our particular focus will be the manner in which the scien- tists revealed that working in clinical reproductive science was a surpris- ingly ongoing ethical challenge. the scientists’ response to this was to elaborate an ‘everyday ethics’ to guide their practice. brodwin (2013: 4) defined everyday ethics in terms of comments made by clinical staff about the ‘rightness or wrongness’ of their work or those ‘second thoughts and fleeting moments of self-doubt’ (2013: 4) that emerge dur- ing routine practice. for example, all scientists took pride in providing r.p. fitzgerald (*) · m. legge university of otago, dunedin, new zealand e-mail: ruth.fitzgerald@otago.ac.nz © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_6 141

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142 r.p. fitzgerald and m. legge all the allowable services1 for their clients. this was despite the occa- sional ‘four milliseconds of gut reaction then a couple more minutes to think through the ethics of it, and then you’re thinking my god it’s hor- rible and then, god but i might as well do it!’ as one scientist described his working life. the trigger for those ‘four milliseconds’ differed for eve- ryone, and learning to be non-judgemental was a key quality that most workers considered essential in order to perform their duty to serve the public. being party as a scientist to what might be, in personal terms, an ethically troubling although completely legal situation was thus an occa- sional unintended outcome of their clients’ reproductive freedom. the resulting everyday ethics that scientists elaborated arose through their modelling of both their personal and professional persona to follow the highest levels of secular service ideals. methods this chapter is written from within the disciplinary style of social anthropology, reflecting the narrative conventions of that field. it draws on an ethnographic laboratory study conducted in two new zealand ivf clinics during 2005. the researchers were allowed supervised access to the laboratories over a 6-week period, during which they were able to familiarise themselves with laboratory routines and were given oppor- tunities to observe the scientists’ daily work practices. this was far from the classical style of ethnography undertaken in the early twentieth century, in which the ethnographer stayed for the traditional (north- ern hemisphere concept) of four seasons deemed necessary to learn the ‘native’ ways. texts produced at that time frequently created an artifi- cially holistic and timeless account of life of the ‘other’. instead, this work used a contemporary urban ethnographic technique to answer a research question. ‘fieldwork’ was undertaken within the extraordinarily confined space of the wet and dry labs of the ivf facilities—a longish room in each case of around 40 m2. the anthropologist’s role in such a contemporary setting was, as wolcott (2008: 46–68) terms it, to ‘experience’, ‘enquire’ www.ebook3000.com

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6 ethics for embryologists 143 into and ‘examine’ the practices, conversations and material culture of the laboratory. any opportunities for old style ‘participant observation’ of such outcome-sensitive scientific procedures as icsi (intracytoplas- mic sperm injection)2 was entirely (and, for clinical outcomes, most fortunately!) beyond the scope of a non-embryologist. however, rou- tine tasks such as receiving labelled samples, restocking cabinets and answering phone calls were undertaken. material culture such as the treasured ‘baby book’ which held a central place in the laboratory, and contained the outcomes of every ivf cycle in the clinic, could be stud- ied. multiple opportunities arose through each working day to question and learn. through these techniques, the delicate rhythms of biological science that made the collection of boxes, benches, microscopes, com- puters, telephones, and reagents a ‘laboratory’ slowly became under- standable. the researchers were also provided with an overview of the entire facility and access to the standard patient information sheets and regu- larly scheduled staff meetings. structured interviews with 14 consent- ing scientists were undertaken, along with repeated conversations in less formal settings, congruent with madden’s (2010) continuum of ethnographic interviewing as a spread of practices including conversa- tions, negotiations and formal interviewing. the project received ethical approval from the university of otago human ethics committee, and although demographic data were collected, the small size of the popula- tion precludes our use of it because of its capacity to identify individu- als who wish to remain anonymous. we have used the term ‘biological scientists’ to describe the variety of science roles that our interviewees fulfilled including andrology, endocrinology and embryology. no labo- ratory technicians worked in these laboratories—instead, the workforce was elite and highly experienced. fragments of their interviews, and our anthropological field notes, observations and reflections are embedded within this chapter. we have used italics in quotations to indicate an emphasis in the scientists’ speech patterns. as is the custom in ethno- graphic writing, we begin our account with a story of our ‘arrival in the field’.

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144 r.p. fitzgerald and m. legge stranded on the shores of reproductive medicine on first arriving in one of the laboratories, we were greeted by the head of the clinic who ushered us rapidly towards the commencing weekly ethical meeting for all staff. ‘this could be valuable, yes, very valuable indeed for your study—you know you needn’t go further than repro- ductive medicine to find all the ethical issues in medicine!’ this mut- tered remark accompanied our propelled entry into a cramped room of unknown faces, all of which turned in synchrony to see the observers thrust into their midst ahead of the meeting’s chair. as the first case of the meeting unfolded, a complex reproductive history emerged. it touched on sperm donation, a partially completed gender reassignment, the rights of donors to continued contact with offspring, comments around the nature of the gendered self and the rights of children to know their genitor/genitrix. these issues were much less commonplace considerations a decade ago than they are today. reproductive medicine has in fact always been a controversial prac- tice (edwards 2006). human assisted reproductive technology (hart)3 is so routinised today, that it is perhaps only a historian of science who would know that edwards and steptoe—the inventors of ivf—initially had significant difficulty with students, colleagues and university administration over what many perceived to be the unethical and ‘distasteful’ nature of hart (edwards 2006: 9). the uk medical research council regarded their proposed programme of research into hart as unethical throughout the 1970s. this had the effect of push- ing the preliminary scientific research towards private funding (johnson et al. 2010) and onto a location outside of edwards’ home university grounds. fewer still would know that the effects of ivf on the human off- spring produced were part of a long ‘natural’ experiment that has taken many years for data to be collected (colpin and bosseart 2008), even as these procedures were conducted in increasing numbers. patient rights activists would be interested to learn that it was through an australian schoolgirl’s high school assignment that one of the first larger (n = 47) www.ebook3000.com

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6 ethics for embryologists 145 studies of what it meant to be an ‘ivf baby’ was published. this was a surprisingly long twenty-one years after the birth of the first baby con- ceived through australian ivf treatment (hewitt 2001). prior to that study, no one had been interested in investigating such experiences. similarly, on an international level, the practice of ivf is not routinely regulated and it is frequently astonishing to australasian students to discover that a wealthy country such as the usa has no federal regula- tion of the practice of ivf. instead, practices such as closed donations, imprecise and meagre background documentation of samples, and pro- cesses such as multiple embryo implantations may occur with impunity in certain clinics. religious opinions regarding hart are a further source of ethical complexity (manninen 2012). there are, for example, those ingenious users of the services who, if sufficiently wealthy, have been able to trav- erse international borders (pennings 2002) to obtain the ethical and religious regulatory environment that matches their desires. clients may also take selective readings of religious doctrine in order to authorise otherwise forbidden hart outcomes (thompson 2006; inhorn 2015). italy, prior to the passage of the highly conservative 2004 act regulat- ing human biotechnology and hart, provides an example of the com- plicated manoeuvring that occurs between national policies, professed religious belief and the behaviour of consumers (engeli and rothmayr allison 2015). private clinics at the time had extremely high uptakes of ivf, including some of the least internationally well-regarded proce- dures, such as implantation of post-menopausal women (the new york times 1993; antinori et al. 1993). this was despite a strong national adherence to catholicism, a doctrine that has always adopted an adver- sarial tone to hart. in comparison, new zealand is a nation with low levels of formal religious affiliation. complex ethical concerns in this locale are instead entwined with ideals of secular service provision. in new zealand, the practice of providing hart is regulated through the hart act (2004) which establishes the hart order (2005), itself a legislative instrument. the order sets out the array of ivf techniques that are established procedures, that is, able to be offered and undertaken without any further ethical approval. new zealand clinics (which are mostly privately owned) must and do

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146 r.p. fitzgerald and m. legge operate within this framework. since 2005 (the time period in which the research underpinning this chapter was based), there have been key events and changes in hart regulatory policy in new zealand, such as the enforcement of the maximum permissible time limit on fro- zen embryo storage, along with the continual development of exper- tise in new scientific techniques within new zealand clinics such as preimplantation genetic diagnosis (pgd).4 a further ongoing and uniquely new zealand feature of hart governance is the national database called the hart register (2016). this register allows children resulting from various gamete donations to access information about the origin of their genetic identity after they turn 18. in summary, the new zealand hart act is one of the most liberal and comprehensive national regulatory frameworks for ivf, particularly given the manner in which access to hart is also influenced by decisions from the new zealand’s human rights commission. regardless of changes in technology and regulatory frameworks, cer- tain core elements of the practice of embryology and other elements of biological science make working as a reproductive scientist an ongoing ethical endeavour. these core elements of an everyday ethical practice emerged as strongly in the newly trained scientists with whom we spoke at the time of our research as it did for those with over 20 years’ expe- rience in hart. the careers of these experienced workers developed from highly specialised, brilliant and somewhat idiosyncratic experi- mental work, to a strongly bureaucratised, highly focused, quality man- aged, complex scientific process (fitzgerald et al. 2013a, b). throughout these changes to everyday practice, the generally accepted marker of a ‘good’ embryologist in new zealand has changed very little. those ele- ments of the ‘good worker’ that combine to make one’s everyday work- ing life an ethical practice are set out below. our work contributes to studies of scientific providers of ivf, which are few in number (erhich et al. 2007; williams et al. 2007; zeiler 2007; fitzgerald et al. 2015) but which offer rich arenas for exploring ethical complexity. www.ebook3000.com

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6 ethics for embryologists 147 tricky situations to begin, we consider those aspects of ivf technology that are most fre- quently cited as ‘troubling’ or ‘controversial’ techniques. these are often the focus of sporadic public consultation in new zealand in order to develop ongoing guidelines for use. the ‘sporadic’ nature is the result of acart’s (advisory committee on assisted reproductive technology) role to provide advice to the minister of health on these issues as well as reviewing existing guidelines and providing advice to ecart (the ethics committee on assisted reproductive technology). ecart explores actual practice issues in hart where specific ethical issues are raised from various laboratories. consultation can also be instituted by media hype surrounding unusual or new uses of the technology such as the widely reported request, in 2002, by deaf partners duschesneau and mccullough to be allowed to use pgd during their ivf treatment to select for an embryo with heritable deafness (bbc news 2002). traces of this controversy appear in the new zealand acart ethical guide- lines as an example of undesirable uses of pgd (see fitzgerald et al. (2013a) for a more extended discussion). while the public may debate the ethics of such uses, scientists working within the reputable and legal laboratory environments of new zealand must implement the outcome of such public debate regardless of how they themselves consider the issues on a personal level. the only other option is to leave one’s job, as in the case for one worker in disagreement with a changed policy to provide ivf to single women. there were several ‘tricky’ issues that arose through scientists’ routine labours that required workers to develop their own particular lines of ethical reasoning to accommodate and rationalise the uses of their spe- cialist skills. intergenerational transfer of gametes was an area that some people took issue with, as one worker commented: [then there was] the case of the daughter who donated her eggs to the mother – i meant that was a bit funny [strange] ahh when the baby’s born

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148 r.p. fitzgerald and m. legge like who will be who? the sister will be the mother and the daughter and her stepfather are actually having the baby together and all the boundaries have been crossed. another worker spoke of such practices as things: … getting weirder and weirder… it seems like there are boundaries and then one boundary gets pushed and then the next. because it’s like ok we did it once for a and case b is only a little bit different and so it goes… onto really bizarre situations. others became troubled over issues that are unlikely to appear in public debates about the uses of ivf, such as behaviour that seemed to demon- strate the potential family might not be good parents. one frequently cited example was of a gentleman going through ivf procedures with his wife and his mistress simultaneously (each unknowing of the other’s presence and purpose). single career women were sometimes pointed out as creating doubt as to whether such seemingly ‘driven’ women would ever take sufficient time off work to create a loving home. an interest in gender selection on the parent’s part was also disturbing for some workers: these people will usually phone when the children are there – you can hear them in the background – and they’re saying: “i only want to know if it’s going to be a boy. i’m not going through all that to get another girl.” and i think: “well you know the children are there and they might not show that they’re hearing – but they are!” only one staff member out of the 14 interviewed on this project con- sidered themselves perfectly comfortable with all and any legal uses of hart. in other publications we have discussed how the ethical dilemmas of reproductive scientists are effaced rather than explored in contemporary public debates about the ethics of reproductive technologies and such ‘tricky situations’. to some degree, this is because of the role of acart and ecart in commenting on unusual or problematic uses of these www.ebook3000.com

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6 ethics for embryologists 149 technologies along with the high public prominence given to bioethics in its role of critical commentator on the morals of the application of bio- medical knowledge and technique within new zealand society (fitzgerald et al. 2015). this public prominence can be seen in the framing of opin- ions and guidelines in the literature produced by acart, in the inclusion of ethics as a module or course within all new zealand health profes- sional training, and in the frequent use by broadcasters and other media commentators of bioethical experts on medical issues of public debate. however, there is an additional factor which relates to the object of care for reproductive scientists assisting with hart. care is directed to the users of the services, the gametes which the scientists manipulate during their technical procedures, the system and the scientist’s role within that system to provide perfect technical care (fitzgerald et al. 2013a, b). unlike other clinical labourers who focus solely on the patients in their care, highly clin- ically involved scientists working in new zealand ivf laboratories focus on maintaining perfection within the process supporting the clinical events of ivf as well. this is rather more like the roles of new zealand hospital managers, computer experts and administrators (fitzgerald 2004) whose concerns are for the system’s health as much as for the client. scientists therefore often focus on the science in ethical debates as no one is more qualified to comment. the scientists with whom we spoke were extremely attentive to the smooth running of their laboratory systems and modulated the emo- tional tone as well as the physical environment of the laboratory. by emotional tone, we refer to the edgy ‘something’ that could pervade the laboratory at times when ‘fert[ilization] rates’ had dropped below their characteristically high levels for no observable reason. scientists were very aware that excellence in technique was assisted by a calm and positive demeanour, and everyone contributed to moderating the emo- tional tone upwards when required. this accompanied deftly interwo- ven contributions to ongoing clinical procedures that ensured a seamless and extremely high-quality scientific process in which glitches, variable quality, time delays and inconsistencies were as removed as could be humanly possible. such attention to the process allowed several scien- tists to distance themselves from the internal quandaries in which their specific expertise could place them. as one worker noted:

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150 r.p. fitzgerald and m. legge i don’t think of myself as being somebody making some kind of superior decision you know we – as a clinic - have come up with certain criteria and those are the criteria we follow [to select viable embryos for transfer]. so it’s much easier to focus on the criteria rather than sort of be constantly thinking, “well, what if i put that one back - what is so wrong with that one?” it is important to note that the scientists were not hiding behind the system, but rather actively nurturing it and attending to its demands. embryologists also trusted in the system to override those moments in their professional lives when, despite excellence in technique, the actual versus anticipated results were disappointing. as a very experienced sci- entist summed it up: you have to be able to not worry about [low fertilization rates] on a day to day basis…[if] the eggs in my care didn’t fertilize very well…hopefully it’s a property of the eggs and sperm and you’re the custodian and you do your best but you can’t …be a surrogate for everybody’s problems. perfection in one’s own technical competency was mandatory in such an environment, which served as a consolation to some. perfection was such a taken for granted aspect of scientific labour that only the most recently appointed scientists could recall not experiencing it: ‘… i’ve got very good and so i feel very confident technically now, but when i was starting that was something i did struggle with’. the interwoven nature of the scientific process could make this practice of science ‘quite stressful’, as several mentioned, because instead of being completely in charge of their own project, as is the case in most research laboratories, ivf consisted of days, months and (for the wealthier clients) years of interwoven practices in which one had to ‘rely heavily on people doing things meticulously um and to sort of report things [unanticipated vari- ations]…everyone needs to be more or less sort of “aware” of the impor- tance of documentation and so on…’ or, as another scientist reflected: ‘you don’t have to be a rocket scientist to be good at this as long you don’t make mistakes!’. most scientists developed forms of self-checking at each stage of their procedures and kept interruptions to a minimum. www.ebook3000.com

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6 ethics for embryologists 151 another summed it up in the following manner: ‘we [as a professional group] are perfectionists at heart…we’re very perfection oriented in our own ways … you are always trying to think of better ways of doing things’. this ethics of competency could be observed during teaching of ivf specific technical procedures to newer entrants to the lab. while more recently hired workers arrived with qualifications such as a masterate in embryology, this still did not include experience with human repro- ductive material. as a senior embryologist noted—reflecting on his own introduction to the work through agricultural uses of embryology—it was quite a mental shift to come to terms with learning how to manipu- late someone’s potential baby rather than a $9000 investment in live- stock ova and semen that could always be reacquired. gawande (2002: 11–34) has written at length on the complex ethical situation of learn- ing surgery when the learning process is conducted on real patients and embryology has many similarities. users of ivf, in the same manner as patients in surgery, wish for the contradictory desires of safety and technical advances in treatment. it is through the body of the learning scientist that such contradictions are reconciled. senior scientists must observe the technique of novices and calculate how much is deleterious to the chances of fertility for the client, while they themselves must also continue learning, refining and improving their own techniques and practices as new techniques and reagents are introduced into interna- tional best practice. one scientist provided an example of the honest self-scrutiny that was part of being competent: ‘the other day when i was trying to hatch and i kept on breaking the needles…for some reason my nee- dle set up wasn’t working for me…’ the scientist describes how they then asked a colleague to finish the procedure, knowing that ‘there’s no time in this job for you to just try, try, and try again [on a client’s mate- rial] in order to get it right’. new zealand’s regulatory environment for hart, which excludes the experimental uses of viable embryos, cre- ates a system that is premised upon the need to train on patients. just as gawande (2002) notes of us surgery, there is no inbuilt option to have a trainee-free experience of ivf. from this emerged the profoundly ethical quality of embryologists’ decisions about who should perform

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152 r.p. fitzgerald and m. legge which part of the ivf procedure, based on their levels of competency and the difficulties of the sample being worked with. senior scientists spoke of observing small aspects of technique such as the handling of pipettes, consistency in careful identification of specimens and atten- tion to aseptic technique that indicated a new member ‘had a feel’ for working in the area. then, they would start to build up a collaborative knowledge basis with the newcomer, as competency had to be acquired in their judgement calls as well as their practical technique. judgement was just as important as manual dexterity in selecting which embryo and sperm to use for icsi, and to decide which embryos to freeze and which should be discarded. one worker described it as ‘building up that repertoire of knowledge so that you’re tapping into someone with more experience for their initial decisions until you get to that point where you are getting the same answers in the discussions and feeling more confident’. scientists could also conceptually disassemble the magnitude of the purpose of ivf (a live baby) into component parts that provided stronger positive reinforcements for competencies achieved. many of the scientists regarded a result of ‘no fert[ilization]’ with more con- cern than the vagaries of whether a live baby was eventually produced. several spoke of an unexplained run of ‘no ferts’ as a ‘bit of a hurdle that you need to get past’. in such cases of apparently inexplicable failure, using the system and ‘following the protocol’, along with the mandatory second checking of steps of the procedure was a source of comfort. however, as another experienced scientist noted, ‘the pro- tocol is the minimum requirement for something—you need that feel for the bigger situation as well’. another mid-career worker said, with some exasperation, that while it was possible to look up the protocols to decide what to do at every decision point, this would take so much time, that the laboratory would grind to a halt, and eventually you had to learn to decide on your own. similar to the points addressed in gawande’s work, staff spoke of how the practice of repetition led to embodied competencies: ‘when i tried to do embryo transfers i was shaking so hard that i could never load the embryos up the catheter because i was so anxious. and i think that was psychological but it was like if i muck up i am dropping www.ebook3000.com

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6 ethics for embryologists 153 somebody’s baby on the floor… all of a sudden one day i burst out crying when i was doing this and after that i was fine, i didn’t shake, and i haven’t shaken since’. in both types of work ‘practice, practice, practice’ was the mantra for learning. if the unfortunate happened and a rare mistake was indeed made, it was taken as the most brutal and effective way of learning. when one worker reflected on the profoundly upsetting experience of failing to inseminate just one of the multiple wells containing ova before placing them in the incubator, the only ethical response was to correct that error in technique and remember forever. the scientist framed it as ‘i’ve never done that again—i always double check!’ bosk (2003), in his study of the surgical culture in 1970s us medicine around errors, describes a similar response as ‘forgive and remember’ with respect to errors of judgement and technique. this attention to consequences permeated all aspects of the laboratory work. that is, …because we are all paranoid about the ‘unspeakables’ like dropping a dish [containing embryos] i always think when i’m in theatre: “don’t trip over! don’t trip over!” and you hold the test tube really tightly and when we carry the dishes we always have one hand out underneath so if it slips out of that hand the other hand will catch it. if you’re walking behind someone you say, “i’m behind you and i’ve got embryos” so that they don’t move their chair back and knock it out of your hands. in every- thing we do, there is this potential for disaster, and so you’re always sort of aware… personhood of gametes and embryos another ‘classical’ element of embryology practice that is often singled out as a contentious issue is the personhood (or otherwise) of repro- ductive material. in this sense, the preceding quote demonstrates well how something as taken for granted and quotidian as a small slip of the hand could become a very significant ‘adverse clinical outcome’. this ethical dilemma surrounding the personhood of reproductive material was most starkly evidenced in relation to the judgement of embryos

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154 r.p. fitzgerald and m. legge and fertilised eggs according to laboratory protocols of potential viabil- ity. perfection in form marked the dividing line between the embryo as potential person and the embryo as waste. the complex variation and nuances in interpretation of such apparently clear and unequivo- cal guidelines in reproductive medicine are rarely studied. however, christoffersen-deb (2012) has made similar observations with great nuance in the interpretation of viability for distressed foetuses, who in the us healthcare system shift from legal non-viability to viability at the moment they attain 24-week gestational age. similarly, embry- ologists were engaged in frequent points of judgement, often time pres- sured (such as when they opened the incubator to observe the level of development in fertilised eggs between days one and three) or in simpler procedures such as selecting which particular sperm to fertilise an egg: the law says we are only allowed to keep embryos up to day six and even then they’ve got to be replaced or frozen…occasionally though i’ve left it to day seven (like if it’s a sunday and monday would be day seven) which is strictly speaking not allowed …but it’s because i want someone’s input about whether it’s good enough to freeze or not… if its good enough to freeze i want to freeze it so that the patient’s got maximum chance and if it’s not good enough i am reassured that someone else has [also] agreed… i know that’s slightly naughty…i need to toughen up… but in a way if you can just throw things away without thinking then it’s about time you left the job. while decisions about ‘good looking’ embryos, eggs and sperm were relatively easy to make, the reality was that staff often worked with reproductive material that was poorer in quality. judgement was key to determining which of all of these imperfections was the least likely to interfere with an eventual pregnancy: we may see that the embryo is very asymmetrical and like it might have the right number of cells but some cells might be very big and some might be very small and we know that’s not good…we know that if we see vacuoles present that’s also not good…sometimes the cells appear very grainy – we don’t really know the significance of that and how much weight to put on it… so there are a lot of factors that we look at and it www.ebook3000.com

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6 ethics for embryologists 155 may be that every embryo shows some sign that is not good – that can be difficult. it was not only the disappointment of clients in not achieving a preg- nancy that scientists considered. they were also aware of the cost sig- nificances of their quality decisions. for example, in the case of poor quality sperm, while the consultant had the final decision on whether to go for a simple fertilisation in the wells of a petri dish or via the far more complex and invasive icsi procedure, a good deal of this decision was based on the scientist’s view of motility and morphology through the microscope. for the client, the decision might mean an investment of an additional thousand dollars or so for icsi if the cycle was pri- vately funded, and in many circumstances, the decision was not clear- cut. how does one balance the savings made by the initial additional cost of icsi, versus the lower likelihood of a pregnancy without it? while many scientists stepped around the issue by noting that it was the doctor who made the final call, when pressed further, all acknowl- edged that that ‘final call’ was based on the information that the scien- tists relayed to the doctor. the exercise of judgement was where the element of responsibil- ity emerged so strongly for the scientists, who uniformly identified the selection of the ‘best’ embryo from several possibilities as one of the most stressful and challenging aspects of the job. this was in part because of the regulatory backdrop to practice, according to which only one or two embryos would be replaced in any cycle, but it was also an issue insofar as they understood the humanity of reproductive material to reside in its ‘potential’. to pick the ‘human’, it turned out, was in practice to pick the ‘beautiful’, which in embryology meant the most symmetrical, the embryo with the best developmental rate and even cleavage (cell division). metaphors of weeding and culling were often used to describe this process and many scientists reflected on the simi- larly ‘wasteful’ quality of ordinary biology in which early eggs were reab- sorbed before release. eventual ‘humanness’ was in part an outcome of quality control, which because of the difficulty of knowing the bio- chemistry of the egg or embryo relied instead on its manifestation as outer form.

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156 r.p. fitzgerald and m. legge in terms of disposal of reproductive material, form and hence devel- opmental potential mattered with respect to the difficulties that staff encountered in disposing of them. many staff casually joked about the abundance of sperm in most samples (saving those from clients destined to use icsi) and had few difficulties in disposing of unwanted sperm. working with sperm was understood by many to be a low-status job within the laboratory, and quite a few scientists laughed at how sperm just ‘swim round and round the petri dish’. eggs were understood to be far more precious due to the difficulty in obtaining them. many of the staff had difficulties disposing of well-formed embryos. frequently this was expressed as a sadness for the abandonment of hope for further children from the commissioning couple, or the stirring of a memory of the staff’s own children and the potential for the embryo to hold similar promise. one staff member didn’t have concerns about dis- posing of embryos, because of a belief that ensoulment occurred only after implantation. when queried about their experiences of client’s reactions to disposal, all were unanimous in recognising the wide vari- ety of responses from breezy unconcern to tears, ‘neurotic’ phone calls and personal collection. some staff offered an opportunity for ritual to clients who indicated their wish to dispose of frozen embryos such as taking them home or planting them under a tree. one of the laborato- ries had developed a tiny flax basket as a receptacle for transporting the embryo home. one scientist summed up their views as: i don’t have a problem disposing of embryos that meet our proto- cols for disposition – the technical chance of them becoming a baby is so remote… however the beautiful embryos which you just know are going to be babies and people send in their consents to dispose of them – i really don’t like that at all…i think the saddest cases are when one partner wants to use her embryos and they’ve split up and then the other doesn’t… you know basically those embryos got disposed of and [in this particular case] she couldn’t use them and i think it’s so selfish of the guy to take that attitude… thus, disposal was an area of ethical conflict for most of the embry- ologists and as they obeyed disposition decisions to the letter, they www.ebook3000.com

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6 ethics for embryologists 157 frequently betrayed their own ethical preferences, i.e. ‘…i mean, ide- ally, i’d prefer everyone put them [good embryos] back inside themselves and gave them a chance i mean it is a bit ….i find it weird when people ring up and say: ‘hey, i’ve got two children and i’ve still got two in the freezer but we don’t want them’. disposition of frozen good looking embryos was the one aspect of the mutually interwoven laboratory prac- tices that scientists were not happy to perform for each other. most scientists spoke of being involved in the process of ivf as ‘humbling’, and while none of them considered that they ever ‘played god’, they did enjoy the closeness of experience to whatever it was that caused fertilisation to occur and embryos to be implanted and success- fully attach. one spoke of the ivf experience as being predetermined by fate, and if spirits were meant to come down and live with a par- ticular family, then ivf was simply the mechanism through which they would arrive. thus, while external debates about the field of ivf and, most recently, those surrounding the mandatory time require- ments for embryo storage in new zealand focus on a sense of whether the embryos are human or not, the practice of the scientists was with a more complex and process-based definition of humanity. all of the material was considered very precious for its potential to be a human being. some scientists argued that it would be impossible to keep on with the job if they were to regard all embryos as human, because ‘most of these embryos are not going to develop normally and you can’t tell which ones really from the outside are going to turn into what’. others argued that if you didn’t understand the potential for fertilised eggs to become human you shouldn’t do the job, as you would not be careful enough with them. the point that everyone was agreed upon was the importance of the ‘potential’ for personhood, rather than the person- hood of embryos per se. staff tended to personify the embryonic material that they were working with, speaking of embryos as ‘little fellows’, reflecting a senti- ment of guardianship or custodial care that a previous interviewee also articulated. in this sense they were forthright in protecting exposure of the fertilised eggs to potential hazards such as overly inquisitive cli- ents who begged staff to frequently check on the development of the embryos. one scientist mused that all the other members of the clinic

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158 r.p. fitzgerald and m. legge had their own object of care but for the scientists it was: ‘our babies! (laughter) our little embryos!’ he continued: and we have to do what is right for them most of the time and so every now and then there will be a clash and somebody will say: “it’s not con- venient for me to come back on that day because i’m getting my hair cut” – well it’s just amazing (sigh) what seemingly to us extraordinary things can get in the way of a process that should be done to the letter! careers shaping selves all of the scientists, bar one, said that engaging in a career in embryol- ogy had a tendency to make people less judgemental, or at the very least reaffirmed a pre-existing tendency to be non-judgemental. the work provided continued opportunities to demonstrate this capacity: there’s one lesbian couple who i initially thought: ‘ahh… i don’t know… and they are the nicest women in the world and [by the end of the pro- cedures] i just was desperate for them to get pregnant so you kind of do have a little bit of a stereotype… and then you meet individual people… another couple i had when i very first started and he was ancient com- pared to her and i thought [in the abstract], “ahh…this is disgusting”. and then i met them and they were the neatest, nicest, couple…yes, i’m sure [this job] has made me more broad-minded. the continuous exercise of self-responsibility was also a quality associ- ated with the work, and the scientists had various stories of how they achieved a balance between their external work life and interests and their responsibilities in the laboratory. these qualities of the work fos- tered a significant degree of ethical self-reflection in which workers attempted to reconcile any challenges associated with these aspects of the job. the self-reflection might be solitary; it sometimes took the form of supportive group discussions with other laboratory staff. it might also take a more formal tone through attendance at the weekly clinic ethical meetings or a private appointment with a clinic counsellor. www.ebook3000.com

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6 ethics for embryologists 159 the bearing of personal responsibility was demonstrated in a variety of ways, including the capacity to maintain documentation even when working under pressure, to regulate one’s internal psyche when engag- ing in meticulous work such as icsi, to be relied upon to maintain commitment to excellence equal to any other member of the team, to ensure one’s demeanour was professional even in the face of panick- ing, rude or anxious clients. the weight of their ethical responsibil- ity pressed scientists to be as perfect in their technique as they could be and gave them the courage to stand their ground on the extremely rare occasions when documentation did not appear to match samples. scientists were also extremely aware of the investment in hope from their patient’s side and understood that poor technique on their part might influence the pregnancy outcome for their client. the public nature of their competencies was probably also an incentive towards even more extensive self-monitoring and diligence, as scientists were publicly assigned responsibilities to various reproductive materials. rates of fertility, for example, were studied and compared for all lab- oratories and for all staff. there was also a tendency for doctors and nurses to attribute any drop in ‘fert rates’ solely to the laboratory staff; however, their own contributions to the delivery of drugs, to implanta- tion, etc., were also variables. it was certainly noticeable that scientists frequently came into the laboratory out of hours or on their days off in order to check on how fertilisation or development of ‘their cells’ was progressing. many spoke of restless nights and general anxiety around ‘fert rates’ and rates of fertilised cell development. some reported the necessity for counselling in order to place their responsibilities for such a vague and uncertain outcome in a more realistic perspective. several scientists summed up these feelings of responsibility as part of their custodial role for the embryos in their care. the experience of such responsibility prompted a great deal of self- reflection. this was allied with the careful maintenance of the scientific backdrop of the laboratory as an ethical practice of care, with faith in the wider clinic itself and the ancillary staff who provided counselling for clients and with faith in the broader regulatory framework’s capac- ity to produce a characteristic understanding of the ethical purpose of embryology for the majority of the scientists as being the provision of

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160 r.p. fitzgerald and m. legge choice to users. one worker said: ‘i err on the side of giving people choice—yes choice—and they have access to counselling where the counsellor will presumably point out all the pros and cons, then at the end of the day they have made an informed choice and …who am i… who am i to judge what somebody else wants…’ this focus on choice for users emerges in the other studies of repro- ductive scientists and medical professionals (zeiler 2007; ehrich et al. 2007; williams et al. 2007; franklin and roberts 2006), although interestingly (as zeiler 2007 notes) it does not appear as an important or desired aspect of the experience of using reproductive services for actual or potential clients. this is an intriguing suggestion, as it high- lights the manner in which ideologies of care and choice might be promulgated through society—through the professional codes of work- ers within powerful institutions such as state-provided health care. most of the scientists in our own study provided ample evidence of needing to engage in self-development work in order to provide a legal service of ivf while also holding various internal concerns about the uses to which their technical skills were put. it should be noted that these con- cerns varied between individuals, from minor qualms to more serious concerns. the important note though is that there were concerns and that the scientists each worked to silence these. such concerns have been noted in the uk study by ehrich et al. (2007), in which the views of clinic workers were analysed with regard to their ethical concerns about the practice of pgd. our own position is slightly different to ehrich et al. (2007) who argue that pgd provides specific original ethical con- cerns for scientists that ivf did not. in our view, like the consultant mentioned at the beginning of the chapter, the practice of all reproduc- tive medicine creates this need to subjugate individual moral concerns to provide a legal service of health care. this is the vocational aspect of the work. in conclusion, our chapter illustrates the context-laden quality of ethical dilemmas in hart in which the competencies of highly skilled scientists are part of a social network from which choice is created for clients of the service (whether the clients wish for it or not). the labour to provide this choice sometimes involves strenuous work on the self for individual scientists, and flags issues of concern around the www.ebook3000.com

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6 ethics for embryologists 161 routinised practice of hart that are rather different to the standard ‘ethical dilemmas’ that appear in bioethics textbooks or media hyper- bole. scientists in our study never viewed their role in hart as ‘playing god’, nor had they any particular qualms about discarding reproduc- tive material that demonstrably failed to match the laboratory protocols for viability. their concerns emerged out of the social network in which they were a part. they were troubled that their skills might sometimes contribute to the development of babies in less than loving homes. they were troubled that users of the service in full legal compliance with the regulation should choose to discard embryos that were ‘beautiful’ and thus likely to result in children. they were ambivalent about the con- tinued range of uses of their skills, despite full regulatory approval for new variations on family formation. more than anything, these reflec- tions demonstrate that, while policy may delineate with precision the line between ethical and non-ethical conduct in human reproduction, the implementation of such policies in practice is rather more fraught. notes 1. the hart act (2004) defines a range of illegal ivf activities including commercial surrogacy and gamete and embryo trading, human embryo manipulation and social sex selection. 2. icsi is a treatment method of male infertility in which a single sperm is injected directly into the egg. the procedure is complex and performed under microscopes and requires considerable practice on the embryolo- gist’s part before it can be performed successfully. 3. we note that assisted reproductive technology (art) is the accepted term of use in the social sciences, but we prefer the term human assisted reproductive technology (hart), as the hart act under- writes the use of the technologies for humans that we discuss in this chapter. 4. pgd is way of testing the genetic make-up of embryos prior to their implantation in a woman’s womb in order to check for genetic differ- ence. the test is generally used to avoid implanting an embryo with vari- ous types of genetic diseases and anomalies.

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162 r.p. fitzgerald and m. legge references antinori, s., versaci, c., hosein gholami, g., caffa, b., & panci, c. (1993). a child is a joy at any age. human reproduction, 8, 1542–1544. bbc news. (2002). april 8 couple ‘choose’ to have deaf baby. bbc news. bosk, c. (2003). forgive and remember: managing medical failure (2nd ed.). chicago: university of chicago press. brodwin, p. (2013). everyday ethics voices from the frontline of community psy- chiatry. berkeley: university of california press. christoffersen-deb, a. (2012). viability: a cultural calculus of personhood at the beginnings of life. medical anthropology quarterly, 26, 575–594. colpin, h., & bossaert, g. (2008). adolescents conceived by ivf: parenting and psychosocial adjustment. human reproduction, 3, 2724–2730. edwards, b. (2006). reminiscences on learning about morals and ethics in biomedicine, reproductive biomedicine online, 14. ehrich, k., williams, c., farsides, b., sandall, j., & scott, r. (2007). choosing embryos: ethical complexity and relational autonomy in staff accounts of pgd. sociology of health & illness, 29, 1091–1106. engeli, i., & rothmayr, a. c. (2015). similar regulatory challenges but con- trasting modes of governance? the puzzle of governing human biotechnol- ogy across western europe. in g. capano, m. howlett, & m. ramesh (eds.), varieties of governance: dynamics, strategies capacities. uk: palgrave macmillan. fitzgerald, r. p. (2004). the new zealand health reforms: dividing the labour of care. social science and medicine, 58, 331–341. fitzgerald, r. p., bathard, h., broad, r., & legge, m. (2013a). reproduction, ethics and heritable deafness: three south island families express their views. sites, 10(2), 129–149. fitzgerald, r. p., legge, m., & frank, n. (2013b). when biological scien- tists become health-careworkers: emotional labour in embryology. human reproduction, 28(5), 1289–1296. fitzgerald, r. p., legge, m., & park, j. (2015). choice, rights and virtue: prenatal testing and styles of moral reasoning in aotearoa new zealand. medical anthropology quarterly, 29(3), 400–417. franklin, s., & roberts, c. (2006). born and made: an ethnography of preim- plantation genetic diagnosis. princeton and oxford: princeton university press. www.ebook3000.com

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6 ethics for embryologists 163 gawande, a. (2002). complications: a surgeon’s notes on an imperfect science. new york: metropolitan books. hart register. (2016). https://www.govt.nz/browse/family-and-whanau/ fertility-issues-and-assisted-reproduction/finding-a-child-or-parent-on-the- sperm-and-egg-donor-list/#about-the-register. hewitt, g. (2001). missing links, unpublished personal interest project. sydney: east hills girls technology high school. inhorn, m. (2015). cosmopolitan conceptions ivf sojourns in global dubai. durham: duke university press. johnson, m. h., franklin, s. b., cottingham, m., & hopwood, n. (2010). why the medical research council refused robert edwards and patrick steptoe support for research on human conception in 1971. human reproduction, 25, 2157–2174. madden, raymond (2010). being ethnographic: a guide to the theory and practice of ethnography los angeles sage. manninen, b. a. (2012). beyond abortion: the implications of human life amendments. journal of social philosophy, 43, 140–160. pennings, g. (2002). reproductive tourism as moral pluralism in motion. journal of medical ethics, 28, 337–341. thompson, c. (2006). god is in the details: comparative perspectives on the intertwining of religion and assisted reproductive technologies. culture, medicine and psychiatry, 30, 557–561. the new york times. (1993). birth to 59-year-old briton raises ethical storm us edition december 29, 1993, retrieved from http://www.nytimes. com/1993/12/29/world/birth-to-59-year-old-briton-raises-ethical-storm. html. williams, c., ehrich, k., farsides, b., & scott, r. (2007). facilitating choice, framing choice: staff views on widening the scope of preimplantation genetic diagnosis in the uk. social science and medicine, 65, 1094–1105. wolcott, h. f. (2008). ethnography a way of seeing (2nd ed.). new york: altamira press. zeiler, k. (2007). complexities in reproductive choice: medical professionals’ attitudes to and experiences of pre-implantation genetic diagnosis. human fertility, 10, 165–174.

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164 r.p. fitzgerald and m. legge authors’ biography ruth p. fitzgerald is an associate professor of social anthropology at the university of otago, dunedin, new zealand. she is a medical anthropologist teaching both graduate and undergraduate courses. her research interests are in moral reasoning, embodiment, human reproduction, oral health and ideolo- gies of health. michael legge holds an honorary associate professorship in the department of biochemistry at the university of otago, dunedin, new zealand. his research interests are in the areas relating to embryology, reproductive biology, prenatal diagnosis, inherited metabolic diseases, social policy, and science com- munication. he has published in both scientific and social science journals in his research and related areas and is involved with a number of advisory com- mittees relating to health, education, and conservation. www.ebook3000.com

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7 beyond altruism: a case for compensated surrogate motherhood ruth walker and liezl van zyl introduction in many countries, including new zealand, australia, the uk, canada, and south africa, unpaid or ‘altruistic’ surrogacy is not only permitted but held forward as an ideal. a ‘good’ surrogate mother is someone who freely gives of herself for the sake of others, while not expecting or receiving anything in return. current legislation in these countries typically allows surrogate mothers to be reimbursed for actual expenses related to the preg- nancy, such as transport costs, medical treatment, and maternity clothing. commercial surrogacy, understood as giving or receiving ‘valuable consid- eration’ in exchange for gestational labour, is strictly prohibited.1 despite this, many surrogate mothers do receive payment ‘under the table’.2 a possible explanation for this is that these supposedly ‘altruistic’ women are, after all, primarily motivated by a desire for money. a competing r. walker · l. van zyl (*) university of waikato, hamilton, new zealand e-mail: liezl.vanzyl@waikato.ac.nz © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_7 165

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166 r. walker and l. van zyl explanation is that they are motivated by a desire to help the intended par- ents and that both parties believe that payment is both appropriate and deserved. our aim in this chapter is to support the latter view. we are not in favour of commercial surrogacy, which we think raises a number of very serious ethical concerns. however, we also think sur- rogate mothers ought to be compensated for their labour and the sig- nificant risks they undertake. we argue that it is not payment as such that lies at the heart of the problems with commercial surrogacy, but rather the fact that the practice is structured as a market-driven com- mercial enterprise. arranging surrogacy according to the norms of the free market can give rise to exploitation of the surrogate mother as well as a violation of her rights, in particular the right to participate in medi- cal decision-making and the right to bodily integrity. some commercial agencies engage in practices that endanger the health and welfare of sur- rogate mothers as well as intended children, for example: implanting multiple embryos to increase the chances of successful implantation, performing foetal reduction surgery in the case of multiple pregnancies, and performing medically unnecessary caesarean sections for the con- venience of the intended parents.3 accepting the view that surrogate mothers should be compen- sated for their labour does not commit us to accepting a commercial model. instead, we propose an alternative form of compensated surro- gacy, which is based on the norms of professions such as nursing and teaching. it is important to note at the outset that we do not advocate that women pursue surrogacy as a career, only that surrogacy should be organized like the caring professions. in the final section, we explain the structure of the professional model and how it avoids some of the objec- tions to altruistic and commercial surrogacy. altruistic surrogacy altruistic surrogacy is often praised as an act of supreme kindness. women who act as surrogate mothers are said to freely and generously give of themselves, without expecting or receiving anything in return. while we certainly do not want to judge or criticize these women, we www.ebook3000.com

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7 beyond altruism: a case for compensated … 167 want to question whether it is acceptable for intended parents to benefit from their extraordinary kindness without giving (and indeed, without being allowed to give) something in return. acts of kindness should be reciprocated in some way. for example, when a friend helps out by babysitting one’s children, one might express one’s gratitude and appreciation by reciprocating in a way that balances her service or sacrifice. a failure to do so could well amount to taking advantage of her kindness. if the friend takes care of the children every day for a year, a failure to reciprocate would most certainly amount to exploitation. of course, not all acts of kindness have to be reciprocated in kind. one such case is when the benefactor gives something of great value but at little cost to herself (e.g. saving a child from drowning in a shallow pond). another such case is when the benefactor is signifi- cantly better off than the beneficiary (e.g. where a rich philanthropist gives money to set up a shelter for homeless people). acts of charity are praiseworthy because they tend to serve the interests of those who are in most need, thereby reducing material inequality. in both cases, a sincere ‘thank you’ may be appropriate, with no further reciprocation required. altruistic surrogacy differs from these cases in important ways. first, a surrogate mother does not help others at little cost to herself. unlike the person who rescues a child from drowning, she experiences a signifi- cant amount of pain and discomfort associated with (either in vitro or artificial) fertilization, pregnancy, and childbirth. whatever her motiva- tions, which are usually complex, it is only the intended parents who benefit in any significant way. further, unlike the rich philanthropist, the surrogate mother is usually no better off, all things considered, than the intended parents. in many cases she is financially worse off than intended parents. given these two considerations, we think it would be wrong for the intended parents not to reciprocate by giving some- thing substantial in return. if her act of kindness remains unrecipro- cated, then it becomes one of self-sacrifice. as badcock (1986) argues, being a party to a self-sacrificing act, where the giver has nothing to gain and possibly much to lose from the act of giving, suggests that the beneficiary’s needs are more worthy than those of the benefactor. acts of self-sacrifice enhance the position of beneficiaries to the detriment of benefactors and are to this extent exploitative.4

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168 r. walker and l. van zyl a possible response to this objection is that women freely choose to become surrogate mothers, fully aware of the fact that they will not be compensated, and further, that they do get something in return—they feel good about what they’ve done. surrogate mothers often derive an enormous amount of satisfaction from helping others form a family. for example, richard fischer, a new zealand fertility expert, writes: it is easy to see surrogacy as being a very one-sided deal with the com- missioning couple being the only ones who gain significantly from it as they are ultimately delivered a child. but for most surrogates there is also much to gain from knowing their actions have ensured both the delivery of a healthy child and the joy to a couple for whom parenthood would otherwise not occur. (fischer 2011) against this, we would argue that merely feeling good about what you have done in carrying a baby for someone else is insufficient reward, if it is a reward at all. pleasure and satisfaction derived from doing a good deed are normal human responses and are not a substitute for tangible or actual rewards that are owed to the benefactor. women choose to act as surrogate mothers because they want to help someone form a fam- ily. however, where paid surrogacy is prohibited, these women must consent to unpaid surrogacy. that is, they either have to consent to an unfair arrangement or be prevented from participating altogether. mere reimbursement of expenses is inadequate if the benefits and harms are to be balanced out in a way that prevents exploitation. many intended parents would like to compensate their surrogate, but are legally prohib- ited from doing so. in a sense, then, they are forced to take advantage of the surrogate mother’s goodwill. in practice, many intended parents do find ways to compensate their surrogate mothers. there is very little that can be done to pre- vent intended parents from making payments ‘under the table’.5 in other cases, a very liberal interpretation of ‘expenses’ allows for surro- gate mothers to receive substantial amounts of money. it is unlikely that these kinds of payments serve as incentives for women to act as surro- gate mothers. rather, in most instances the intended parents want to compensate their surrogate mother out of a sense of fairness or as a www.ebook3000.com

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7 beyond altruism: a case for compensated … 169 means of expressing their gratitude and appreciation. intended parents risk breaking the law and may end up feeling guilty for doing what they believe is the right thing. they also put the courts in an impossible posi- tion where transfer of legal parentage is required. while technically the parents are in breach of the law, the judge must find some way of allow- ing the transfer in order to protect the best interests of the child. despite the concerns about altruistic surrogacy, there remains serious and widespread opposition to the idea of compensating surrogate moth- ers. one worry is that paid surrogacy amounts to treating women’s bod- ies as objects or commodities and that it involves a form of exploitation. another objection is that paid surrogacy is a form of baby selling. a further worry concerns the surrogate mother’s motivation: the thought is that paid surrogate mothers are motivated by money rather than a genuine desire to help others and that they will therefore be less reli- able and trustworthy than women who are motivated by altruism. we examine these objections in the following section and argue that it is not payment itself that is the problem, but the fact that commercial sur- rogacy, as currently practised in places like india, thailand, and parts of the usa, is based on a commercial or contractual model. our focus is on commercial surrogacy in the usa, as it offers a model most likely to be advocated in places like the uk and australasia. commercial surrogacy in its simplest form, a commercial relationship consists of two parties who enter into an agreement to exchange a specific product or service for money. both parties are assumed to be motivated by personal gain, and given that each has something the other wants, both have some power to negotiate an agreement that is favourable to them. buyers can ‘shop around’ to find the most attractive deal, and vendors are free to advertise their goods and ser- vices, to offer discounts and guarantees, and so on. the parties are free to enter an agreement, but once they have done so, their liberties are restricted in accordance with the terms specified in the contract. each has a set of clearly defined rights and responsibilities, and neither party has the power to renege on the agreement without incurring a penalty of some kind.

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170 r. walker and l. van zyl the distinguishing feature of commercial surrogacy in the usa is that it based on a contractual or commercial model. both parties are assumed to be motivated by personal gain to enter an agreement, which stipulates that the surrogate mother is to bear a child for the intended (or ‘commissioning’) parents in exchange for a fee. the contract typi- cally includes a detailed list of gestational services. the list provided by a prominent us agency includes baseline compensation of us$3000 per month, plus a number of ‘variable expenses’: multiple birth compensation (beginning at week 18) experienced surrogate—additional compensation caesarean section (if directed by a physician) invasive procedure compensation, per occurrence foetal reduction labour induction due to no heartbeat or abnormalities loss of uterus loss of one or more tubes ectopic pregnancy surgery source conceiveabilities (2016a) $5000 $5000 $2500 $500 $750 $2000 $2500 $1000 $1000 the contract also contains sections that specify the rights and responsibilities of each party, as well as the penalties for breach of the agreement (as discussed below). what motivates many objections to commercial surrogacy contracts is that they put a price on a woman’s body as well as her experience of pregnancy. in what follows we discuss three such objections. the money motive a frequent objection to commercial surrogacy is that it involves exploi- tation of vulnerable women, for whom payment acts as an undue incen- tive, leading them to ignore their other interests.6 a related concern is that surrogate mothers who are motivated by monetary gain rather than a sincere desire to help others are less likely to be reliable or trustworthy, and more likely to put the life or health of the intended baby at risk (british medical association 1996). money is thus deemed pernicious in two ways: it allows the exploitation of vulnerable women who act www.ebook3000.com

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7 beyond altruism: a case for compensated … 171 against their own interests for the sake of money, and it attracts untrust- worthy people prepared to provide their body parts for money. a common response to these objections is to question the assump- tion that commercial surrogate mothers are primarily motivated by money. some of the studies conducted in the us report that the most common reasons for becoming a surrogate mother are things such as empathy for childless couples, helping others experience the joy of parenthood, and doing something special, thereby gaining a sense of achievement or enhancing their self-esteem.7 further, agencies often reassure their clients that the women they employ are financially sta- ble and motivated by a sincere desire to help others form a family. to be accepted into the programme women must agree to psychologi- cal testing, have no history of clinical mental illness or criminal activ- ity, have a stable and responsible lifestyle, must agree to a home visit with all persons and pets residing in the home, and be financially sound. in particular, they must not seem overly motivated by the fee (conceiveabilities 2016b). a number of studies suggest that financial motivation does play a part in the decision (laufer-ukeles 2013; van den akker 2003). the true extent to which surrogate mothers are motivated by money is uncertain, but given that commercial agencies openly state that they are seeking surrogate mothers who are not motivated by money, it is likely that women will hide any financial motivation they might have and will pretend instead that they don’t care about money at all. the fact that women who want to participate in commercial surrogacy must hide self-interested motivation to be accepted into the programme points to a significant shortcoming of the commercial model for surrogacy. in commercial transactions, both parties are expected to look out for their own interests and to negotiate a contract that is favourable to them. they need not concern themselves with the interests of the other party. in the case of commercial surrogacy, where one party looks out for their own interests, while the other is expected to show that she is only inter- ested in serving the needs of the first, the surrogate mother is put at a significant disadvantage when it comes to negotiating a fair contract.8 women who choose to be surrogate mothers are often taking a step to improve their situation. just as ordinary workers are not expected to

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172 r. walker and l. van zyl hide the fact that money helps motivate them, it is unreasonable and detrimental to the surrogate mother to expect her to disguise her moti- vation. money motivates all workers to some extent. the rights and liberties of the surrogate mother apart from seeking out women with the desired physical, psychologi- cal, and motivational attributes, commercial agencies try to protect the interests of their clients (the intended parents) by including a list of responsibilities in the contract. surrogate mothers typically agree to fol- low a prenatal examination schedule, to submit to any medical tests or procedures as prescribed by her obstetrician, to avoid dangerous sports and hazardous activities, to avoid cigarettes, alcoholic beverages, and illegal drugs, and to avoid travelling abroad after the second trimester. in our view, these restrictions can be justified on the grounds that they provide the best chance of successfully gestating the intended baby, who has its own interests in being healthy. all employment contracts con- strain the liberty of the employee to some extent, and as long as the surrogate mother freely enters the agreement, these restrictions do not unduly limit her liberty. however, commercial surrogacy contracts have a disturbing tendency to encroach on the human rights of the surrogate mother, and this can never be justified. surrogacy contracts frequently include a requirement to waive the right to medical confidentiality and to permit the intended parents to make important decisions about the progress of the preg- nancy, such as whether to have an abortion in case of foetal abnormality or to undergo foetal reduction in case of multiples. proponents of com- mercial surrogacy often try to justify these requirements on the grounds that the intended parents acquire the right to make medical decisions on behalf of the surrogate mother or that they are paying her to gestate a child that belongs to them. however, we think they constitute a clear violation of the surrogate mother’s rights to autonomy and bodily integ- rity. these are fundamental human rights that cannot be contracted away. if the intended parents are granted a right to make decisions on behalf of the surrogate mother, they will be using her body merely as www.ebook3000.com

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7 beyond altruism: a case for compensated … 173 the environment in which their child grows. this clearly amounts to objectification. it is only when the surrogate mother’s basic human rights are recognized and respected that objectification is prevented. women who enter a commercial surrogacy agreement typically waive their right to decide whether to terminate the pregnancy. a sample con- tract provided by a popular online community includes the following clause: if the fetus(es) has been determined by any designated physician to be physically or psychologically abnormal, the decision to abort the preg- nancy … shall be the sole decision of the genetic father and intended mother… if she refuses to have an abortion, the surrogate agrees to the termination of all expenses…. further, the genetic father and intended mother shall not be responsible for those medical expenses incurred by the surrogate due to unforeseen complications of which would have been avoided had an abortion occurred. furthermore, in the event that the surrogate refuses to proceed with a clinical abortion, all further perfor- mance required by the genetic father and intended mother under the terms of this agreement is excused. (all about surrogacy.com 2016) an increasing number of surrogate mothers report being pressured by intended parents to undergo termination or foetal reduction.9 although the surrogate mother cannot legally be forced to abide by the intended parents’ wish for termination or reduction, the terms of the contract make it almost impossible, or at least very unattractive, for her not to do so. the financial penalties are such that very few surrogate mothers are able to resist the pressure to abide by the intended parents’ wishes. one attempt to justify the abortion clause is to argue that the right to liberty includes a right to enter contractual agreements and that prohibit- ing or limiting women’s ability to enter such agreements would be a gross violation of their personal autonomy. in this view, by signing a contract the surrogate mother is not waiving her right to decide whether to have an abortion; rather, she is exercising this right by giving consent, in advance, to having an abortion under specific circumstances. according to this line of reasoning, consenting in advance to abortion is no different from con- senting in advance to undergoing an ultrasound scan or blood test.

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174 r. walker and l. van zyl we think this argument is flawed. as noted above, we support a woman’s right to enter into an agreement with others to act in clearly specified ways, such as undergoing prenatal screening and having reg- ular doctor’s visits. however, the right to contract does not include a right to waive one’s human rights. to give up the power to make deci- sions about medical interventions is just such a right. while there are some things one can consent to in advance, termination of a preg- nancy is not one of them. the decision to terminate a pregnancy on the grounds of foetal abnormality is extremely complex and involves many variables, including the nature of the abnormality, its likelihood and severity, the gestational age of the foetus, and the health of the preg- nant woman. in order to give free and informed consent in advance, the surrogate mother would have to be given a list of all the possible con- ditions in all their possible combinations, which is literally impossible. in addition, people are generally unreliable when it comes to predict- ing whether they would choose to terminate a pregnancy under cer- tain circumstances. for example, an integrative review of recent studies found that the decision to undergo an induced termination for down syndrome varies depending on whether participants were prospective parents recruited from the general population (between 23% and 33% say they would terminate), or women who received a positive diagnosis of down syndrome during the prenatal period (between 89% and 97% actually chose to terminate) (choi et al. 2012). we would argue, there- fore, that neither the surrogate mother nor the intended parents can reach an informed decision in advance (that is, prior to pregnancy being established). one cannot contract out one’s right to bodily integrity to anybody. we agree with the opinion expressed by the american college of obstetricians and gynecologists, namely that ‘[t]o allow a woman to contract away the right to control her own health would be to institute contractual slavery’ (acog 1992: 139–144).10 objectification of the intended baby another familiar objection to commercial surrogacy is that it involves treat- ing the intended baby as an object or commodity. some of the discomfort www.ebook3000.com

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7 beyond altruism: a case for compensated … 175 with the commercial model stems from the fear that, once it becomes fully embraced, we will see a market with women advertising to attract custom- ers and threatening to withhold the ‘product’ if payment is not forthcom- ing. intended parents would shop round for the best deal or refuse delivery of a defective product. in the 1980s, nancy davis expressed concerns that once commercial surrogacy became a widespread practice, babies will come to be viewed as no more special a purchase than a new car, and that par- ents’ love for their children will no longer be unconditional but will depend on whether their children were ‘good products’ (davis 1988: 51–77). supporters of commercial surrogacy try to refute this objection by pointing out that the intended parents do not pay for the baby nor for the right to become legal parents, but rather for the surrogate mother’s gesta- tional services. the intended baby is thought to belong to the intended parents from the outset, on the grounds that it was conceived using their (genetic) gametes, or gametes that were donated to them (sometimes by the surrogate mother herself). yet, if the contractual model is being used, it is almost impossible to see it in any other terms than the production of a baby to be handed over. if there are clauses in the contract that enable the parents to refuse to take the baby, or allow the surrogate mother to withhold it, then the baby is treated as a commodity. commercial surrogacy contracts often lead intended parents to believe that they have a right, not only to a child, but to a child that meets their specifications. contracts typically specify that the surro- gate mother is to undergo certain diagnostic and screening procedures and to agree to a termination for foetal abnormality if that is what the intended parents want, and this encourages the view that intended par- ents should be able to refuse to take custody of child if the surrogate does not comply. commercial surrogacy agencies in the usa attempt to avoid this problem by making it clear, in the contract, that the intended parents will take custody of the resultant child regardless of whether he/ she suffers from any congenital or other abnormalities or defects and that the surrogate mother will not be held responsible for such abnor- malities or defects. however, commercial contracts often add the fol- lowing qualification: ‘as long as the surrogate has not breached the terms of this agreement’. and a surrogate mother breaches the contract if, for example, she:

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176 r. walker and l. van zyl acts in a manner dangerous to the well-being of the unborn child(ren) by failing to follow the directions of her physician, using medications or drugs not prescribed by her physician, using any tobacco product, using alcohol, attempting to intentionally inflict harm to the unborn child(ren), or acquiring a venereal disease during the pregnancy. knowingly provides false or misleading information to any physician or psychotherapist as specified herein. (all about surrogacy.com 2016) it is clear that the fate of the child in this arrangement is ultimately determined by the contract between the surrogate mother and the intended parents. in this sense, the child is treated as a product or com- modity. the professional model objections to commercial arrangements lead many people to reject compensated surrogacy altogether. this is a mistake. as argued in the first section, allowing only unpaid or altruistic surrogacy is not sufficient for preventing exploitation of surrogate mothers.11 furthermore, many of the objections to commercial surrogacy apply to altruistic surrogacy as well.12 to avoid exploitation and objectification of women and chil- dren, we propose that surrogacy be organized according to the norms of professions such as nursing, teaching, and social work.13 like other professionals, the good surrogate mother would be motivated by care or concern for her clients and a desire to do something worthwhile and would also be compensated for her labour. surrogacy should be paid on a fee for service basis, with a professional regulatory body that over- sees selection of surrogate mothers, training, and ethical standards. this body would ensure fair payment, that consent was freely given, that the parties were fully informed of their rights and responsibilities, and that constraints on the surrogate mother were legitimate. exploitation and unreasonable demands by the intended parents would be precluded, thus minimizing the risk of harm. in what follows, we show how the professional model avoids the objections to commercial surrogacy that were discussed in the previous section. www.ebook3000.com

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7 beyond altruism: a case for compensated … 177 generosity and compensation consider, again, the claim that women who are motivated by a desire to help others form a family are more likely to act in the best interests of the intended baby. even if we accept this claim, it does not follow that surrogate mothers ought not to be compensated for their labour, for the simple reason that payment does not preclude generosity.14 there are various paid roles or occupations that one can only perform well if one views the activity as worthwhile in itself, rather than as a means of making money. consider, for example, a profession such as nursing. it seems likely that nurses who care about the welfare of their patients will do a better job than those who are simply ‘in it for the money’. yet we do not use this as a reason not to pay them (or to reimburse them for expenses only). an act of giving can be motivated by generosity even if it is done on condition of receiving something in return.15 in the professional model, women will ideally be motivated to participate by a desire to offer worthwhile service, while nonetheless expecting to be compensated for their work as well as the risks they undertake. in the commercial world, the motto is caveat emptor (let the buyer beware). the first principle in medicine—and it transfers to the other professions—is primum non nocere (first do no harm) (van mook et al. 2009: e82). in the former, the buyer protects herself with a detailed, enforceable contract, and both parties act in their own interests. the latter, by contrast, puts the responsibility on the professional to protect and serve the client’s interests. the professional is required to be trust- worthy in a way that the tradesperson, for example, is not, because cli- ents are vulnerable and typically a great deal is at stake. the professional model does not view the surrogate mother as a ‘womb for hire’. rather, it emphasizes a number of ethical principles that govern the relationship between the intended parents, the surro- gate mother, and the intended baby. the professions serve interests connected to fundamental human rights and human flourishing, such as health, legal rights, and education. the distinctive ethical dimension requires both a code of practice and that professionals have the ‘val- ues, attitudes and motives’ that enable them to put the client’s interests

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178 r. walker and l. van zyl ahead of their own (carr 1999: 33–46). clients are vulnerable because loss of health or liberty and an inadequate education are very serious barriers to flourishing. the vulnerability of couples seeking a surrogate mother belongs to the same category. for them, having children is such an important constituent of their happiness that they are prepared to go to great lengths to secure it. agreements and contracts notwithstanding, they have little control over the surrogate mother’s conduct during the pregnancy and have to depend on her trustworthiness and generosity. the ground of professional trustworthiness is the public pledge that members of professions make to provide services and to put the clients’ interests ahead of their own (koehn 1994). in the case of surrogacy, the promise the surrogate mother makes to the parents, and the implicit promise to the foetus, is at the heart of the relationship. a contract, by contrast, cannot establish trust, and may even undermine it by attempt- ing to control every aspect of the relationship. furthermore, because obligations are confined to those arising from the stipulations in the contract, a commercial surrogate mother would be free to act as she pleases should an unexpected contingency arise. in a complex situation such as surrogacy, where there are three sets of interests involved (the intended parents’, the foetus’s, and the surrogate mother’s), all of which can be affected by unforeseen or unlikely events, dependence on such a contract is potentially dangerous for the parents. a pledge of service, however, allows for the unforeseen—just as it does for every profession where interests are complex and open-ended—because contingencies can be discussed and decided upon as they arise on the basis of the trust already established. if the selection of surrogate mothers is based on the values, attitudes, and motivations that enable generosity then the matter of payment ceases to be noxious. the selection of nurses, doctors, and teachers for the right motives is done quite independently of considerations of pay- ment. generosity and remuneration are not mutually exclusive for the standard professions, and so there is no reason to think that they would be for surrogate mothers. many women would like to be surrogate mothers but are prevented from doing so because they cannot afford to undertake unpaid surrogacy. compensation would enable them to do the generous thing they are already disposed to do. that is very different www.ebook3000.com

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7 beyond altruism: a case for compensated … 179 from saying that they would be ‘doing it for the money’. for example, pamela laufer-ukeles (2013) found that while surrogate mothers might not agree to undertake pregnancy’s considerable inconvenience and expense without payment, the desire to help others is an important con- sideration.16 the rights and liberties of the surrogate mother professions have regulatory bodies that oversee selection, training, and ethical standards. they also protect the interests of their mem- bers to ensure that they are not exploited or forced into unethical con- duct. pressures on professionals to act in ways that are contrary to the standards of the profession can be overlooked, as can unfair contrac- tual obligations, when the self-regulating nature of professions is being evaluated. individual doctors, nurses, and teachers cannot easily defend themselves or their profession, but professional bodies can and do. the professional model requires surrogate mothers to be registered and clin- ics to be licensed and regulated through an independent body, which is responsible for setting the fees women receive, as well as the profes- sional standards, rights, and duties of all parties. individual surrogate mothers are vulnerable to exploitation, but a regulated profession would offer protection by setting standards of conduct, as well as limitations on what parents or agencies employing women as surrogate mothers can demand of them. to guard against the risk of objectification, the professional model emphasizes the fact that the surrogate mother, as a pregnant woman, has the right to make free and informed decisions about whether to undergo invasive diagnostic tests, have an abortion or undergo foe- tal reduction. she is not a vessel containing a foetus but a person with the right to bodily integrity. the intended parents must respect her agency and refrain from coercive actions. they must accept that they are entrusting the surrogate mother with the fate of the intended baby (walker and van zyl 2015: 529–535). in order to secure an environment in which the surrogate mother can freely exercise her right to bodily integrity, payment should not be tied

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180 r. walker and l. van zyl to the delivery of a healthy infant. although many critics of commer- cial surrogacy claim that it is the payment itself that is problematic, we argue that the flaw lies in the way payment is managed. for example, in cases where the surrogate mother has an abortion for foetal abnor- mality, she should still receive full payment so that she is not penalized for doing the right thing. the relationship is based on trust rather than a contract and the intended parents are not buying a baby but (com- mitted) service. regulated fees, insurance, and the use of trust accounts would eliminate a vast tranche of the problems that currently plague contractual surrogacy arrangements. money should not be a factor in her decision whether to have an abortion, or any other decision affect- ing the welfare of the intended baby or the surrogate mother herself. avoiding objectification of the intended baby in the professional model, the intended parents are recognized as the legal parents from the moment the baby is born. this ensures certainty for both parties, and best serves the needs and interests of the child because the intended parents cannot abandon the baby any more than the surrogate mother can withhold it from them. more importantly, it allows us to avoid the objection that commercial surrogacy involves treating the baby as an object, in so far as the contract allows the intended parents to refuse to accept custody if the surrogate breaches the contract in some way. certainty for the intended parents by way of legal parentage from birth provides certainty for the intended baby. looking at surrogacy through the un convention on the rights of the child (1990), gerber and o’byrne (2015: 81–112) identify the child’s rights to an identity, name, nationality, and to know and be cared for by its parents as central to surrogacy. the professional model provides for all of these from birth, without the need for a transfer of parentage or any dispute about who the child’s parents are. if the intended parents are the parents uncondi- tionally, then the commodification objection loses its force. the baby is not a product to be exchanged but a person who cannot become the subject of a dispute. www.ebook3000.com

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7 beyond altruism: a case for compensated … 181 conclusion in conclusion, then, we propose a professional model in which surro- gate mothers are motivated by a desire to do something worthwhile and are compensated for their labour. it is widely accepted that the work done by members of other caring professions—such as taking care of the sick and vulnerable—is in some sense priceless. however, people still expect to be compensated for their labour. to guard against exploi- tation of surrogate mothers, and other harmful and unethical practices, we favour the creation of a professional body that would have the task of screening and registering surrogate mothers, regulating fees, and licensing and monitoring clinics that offer surrogacy services. licensed clinics would be required to use registered surrogate mothers and pro- vide all support services that the parties may need at any time dur- ing the arrangement. a professional model of surrogacy acknowledges the fundamentally ethical nature of the act of giving birth to a child for someone else and recognizes the vulnerability of both the surrogate mother and the intended parents. it accords the women who choose to act as surrogate mothers the dignity enjoyed by other professionals whose need for payment is not assumed to reduce their generosity. notes 1. in new zealand, for example, sect. 14(3) of the human assisted reproductive technology act (2004) prohibits commercial surrogacy and states that it is an offence to give or receive ‘valuable consideration’ in exchange for participation in a surrogacy arrangement. the law does not allow for payment to cover the cost of time off work or to com- pensate the surrogate mother for inconvenience. there are significant penalties for any person who breaks the law. 2. see woulfe (2013) and mussen (2014). 3. see rudrappa and collins (2015). 4. we discuss this point in van zyl and walker (2013). 5. see trenwith (2010) and woulfe (2013). 6. see panitch (2013).

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182 r. walker and l. van zyl 7. see ciccarelli and beckman (2005), laufer-ukeles (2013), and ragoné (1994). 8. see drabiak et al. (2007) and almeling (2009). 9. see, for instance, campanile (2015) and conley and campanile (2015). 10. we discuss this issue in walker and van zyl (2015). see also drabiak- syed (2011). 11. see also van zyl and walker (2013) and millbank (2015). 12. see carbone and madeira (2015). 13. it will be noted that most members of these professions, and indeed all surrogate mothers, are women. the link between gender and exploi- tation in the caring professions raises a unique set of questions, some of which we discuss in forthcoming work. in this chapter, we set aside these questions and instead focus on the compatibility of care and com- pensation in the professions. caring is not gendered. there are men in each of these professions who provide exemplary care. 14. compensation does preclude altruism, where altruism is defined as a selfless regard for others. as we argue elsewhere, altruism is not a mor- ally desirable ideal (walker and van zyl 2016). 15. indeed, as culyer (1973) notes in his discussion of blood donation, monetary benefits may induce altruistic behaviour that would other- wise be constrained if the full cost were on the donor. 16. shaw and bell (2015) make a similar point about living organ donation in new zealand, especially with respect to prospective donors from low-income families. acknowledgements the authors would like to thank rhonda shaw and an anonymous reviewer for helpful comments and suggestions on earlier drafts of this chapter. references all about surrogacy.com. (2016). sample gs contract. http://www.allaboutsur- rogacy.com/sample_contracts/gscontract1.htm. almeling, r. (2009). gender and the value of bodily goods: commodification in egg and sperm donation. law and contemporary problems, 72(3), 37–58. www.ebook3000.com

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7 beyond altruism: a case for compensated … 183 american college of obstetricians and gynecologists. (1992). ethical issues in surrogate motherhood. international journal of gynecology and obstetrics, 31, 139–144. badcock, c. r. (1986). the problem of altruism. oxford: basil blackwell. british medical association. (1996). changing conceptions of motherhood: the practice of surrogacy in britain. london: british medical association. campanile, c. (2015). dad demands abortion after surrogate learns she’s hav- ing triplets. new york post, retrieved from http://nypost.com/2015/11/25/ surrogate-carrying-triplets-says-dad-demanding-she-abort-one/. carbone, j. & madeira, j. l. (2015). the role of agency: compensated sur- rogacy and the institutionalization of assisted reproduction practices, 90(7) washington law review online. carr, d. (1999). professional education and professional ethics. journal of applied philosophy, 16(1), 33–46. choi, h., et al. (2012). decision making following a prenatal diagnosis of down syndrome: an integrative review. journal of midwifery and women’s health, 57(2), 156–164. ciccarelli, j. c., & beckman, l. j. (2005). navigating rough waters: an overview of psychological aspects of surrogacy. journal of social issues, 61, 21–43. conceiveabilities. (2016a). gestational sched- ule—2012. retrieved from https://www.conceiveabilities.com/pdf_forms/ surrogacyfee_schedule2012.pdf. surrogate program fee conceiveabilities. (2016b). surrogacy requirements. retrieved from https:// www.conceiveabilities.com/surrogates/surrogate-requirements. conley, k., & campanile, c. (2015). second surrogate mom steps for- ward with abortion battle. new york post, retrieved from http://nypost. com/2015/11/26/second-surrogate-mom-steps-forward-with-abortion-battle/. culyer, a. j. (1973). quids without quos—a praxeological approach. in a. alchian et al. (eds.), the economics of charity: essays on the comparative eco- nomics and ethics of giving and selling, with applications to blood (pp. 33–61). london: institute of economic affairs. davis, n. (1988). reproductive technologies and our attitudes towards chil- dren. logos, 9, 51–77. drabiak, k., et al. (2007). ethics, law, and commercial surrogacy: a call for uniformity. journal of law, medicine & ethics, 35, 303–305.

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184 r. walker and l. van zyl drabiak-syed, k. (2011). waiving informed consent to prenatal screening and diagnosis? problems with paradoxical negotiation in surrogacy contracts. journal of law, medicine & ethics, 39(3), 559–564. fischer, r. (2011). surrogacy. ohbaby! magazine, 14. retrieved from http:// www.ohbaby.co.nz/conception/surrogacy/. gerber, p., & o’byrne, k. (2015). souls in the house of tomorrow: the rights of children born via surrogacy. in p. gerber & k. o’byrne (eds.), surrogacy, law and human rights (pp. 81–112). burlington: ashgate. koehn, d. (1994). the ground of professional ethics. london: routledge. laufer-ukeles, p. (2013). mothering for money: regulating commercial inti- macy. indiana law journal, 88(4). millbank, j. (2015). rethinking commercial surrogacy in australia. journal of bioethical inquiry, 12(3), 477–490. mussen, d. (2014). surrogacy payment review urged. the dominion post, august 14, 2014. panitch, v. (2013). global surrogacy: exploitation to empowerment. journal of global ethics, 9(3), 329–343. ragoné, h. (1994). surrogate motherhood: conception in the heart. boulder: westview press. rudrappa, s., & collins, c. (2015). altruistic agencies and compassionate consumers: moral framing of transnational surrogacy. gender & society, 29(6), 937–959. shaw, r. m., & bell, l. j. (2015). because you can’t live on love: living kid- ney donors perspectives on compensation and payment for donation. health expectations, 18(6), 3201–3212. trenwith, c. (2010). surrogacy payments difficult to stop. brisbane times, february 12, 2010. van den akker, o. (2003). genetic and gestational surrogate mothers expe- rience of surrogacy’. journal of reproductive and infant psychology, 21(2), 145–161. van mook, w. n. k. a., et al. (2009). professionalism: evolution of the con- cept. european journal of internal medicine, 20, e82. van zyl, l., & walker, r. (2013). beyond altruistic and commercial contract motherhood: the professional model. bioethics, 27(7), 373–381. walker, r., & van zyl, l. (2015). surrogate motherhood and abortion for fetal abnormality. bioethics, 29(8), 529–535. walker, r., & van zyl, l. (2016). altruism and generosity in surrogate moth- erhood. research in ethical issues in organisations, 15, 121–133. www.ebook3000.com

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7 beyond altruism: a case for compensated … 185 woulfe, c. (2013). the untold story of nz’s surrogate babies. new zealand listener. retrieved september 26, from http://www.listener.co.nz/current- affairs/the-untold-story-of-nzs-surrogate-babies/. authors’ biography ruth walker is a senior lecturer in philosophy at the university of waikato, new zealand. her research interests are in bioethics, research and professional ethics, and philosophy of religion. she and dr. van zyl are collaborating on a long-term research project about ethics in surrogacy and assisted reproduction. liezl van zyl is a senior lecturer in philosophy at the university of waikato, new zealand. her research interests include various topics in ethical theory and applied ethics. she published a book, death and compassion: a virtue- based approach to euthanasia in 2000. liezl is currently writing a book on vir- tue ethics and collaborating with ruth walker on a research project on the ethics of surrogate pregnancy.

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8 keeping it in the family: debating the bio-intimacy of uterine transplants and commercial surrogacy charlotte kroløkke and michael nebeling petersen introduction on a friday morning in october 1998, we had the usual preoperative informative talk with a patient, this time with angela, a charismatic woman in her mid-twenties. she was informed about the consequences and pos- sible complications associated with the open radical hysterectomy that we would perform on her the following week because of stage 1b cervical can- cer. we told her that she would become permanently infertile, although her ovaries would be preserved. apparently, she had a solution-oriented mind and quickly responded to us: i know the solution to the problem – you can transplant the womb from my mother. (brännström 2015: 676) imagine giving birth from the same uterus that gave birth to you. using angela’s personal story, professor and chief physician in the department of obstetrics and gynecology at gothenburg university in sweden mats c. kroløkke (*) · m.n. petersen university of southern denmark, odense, denmark e-mail: charlottekro@sdu.dk © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_8 189

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190 c. kroløkke and m.n. petersen brännström introduced his keynote at the 2015 nordic fertility society conference held in reykjavik iceland. the australian woman provided brännström, during his one-year internship in adelaide australia in 1998, with the idea for what is now known as uterine transplantation (hereafter ut).1 brännström is not the first to undertake ut, however. it had already been undertaken, albeit unsuccessfully, in saudi arabia in 2000 and later in turkey in 2011. the swedish uterine transplantation project (hereafter utx)2 is, however, as brännström presents it, the first in the world to successfully carry out a transplant from a live donor to a woman with absolute uterine factor infertility (aufi) ,3 resulting in the first successful birth of a healthy child in september of 2014. while brännström situates his medical quest within a desire to give women like angela an ability for genetic and biological motherhood, the remaining part of his keynote outlined the pioneering medical efforts including the microsurgical skills required, first undertaken in rodents in sweden, later in monkeys in kenya, and now in humans—inquiring into the nature of the uterus as a potentially disentangled and reinvigorated reproductive organ. in this chapter, we discuss how uterine exchanges whether as ut or surrogacy are positioned in danish and swedish media debates. in sharp contrast to ut, which involves 10- to 12-h complicated donor surgery followed by high-risk pregnancies, surrogacy appears less expen- sive, medically less risky, and a low-tech option yet commercial sur- rogacy is, nevertheless, de facto illegal in both countries.4 as noted by brännström, in his keynote, ut privileges pregnancy and birthing as a prerequisite to motherhood and when using the uterus from a known donor, ut gets positioned within the legitimacy of the extended fam- ily. commercial surrogacy contracts are illegal in both denmark and sweden, yet many swedish and danish infertile heterosexual and homosexual couples and singles have turned to commercial surrogacy in other countries in their pursuit to have a child (nebeling petersen et al. 2016). the stories of these couples and the legal and ethical grey zones they operate within have characterised both the danish and swedish public debates on surrogacy. in what follows, we turn to the develop- ment of the analytical construct of bio-intimacy to help make sense of how these exchanges are mediated and discussed. clearly, uterine www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 191 exchanges whether in the form of ut or surrogacy reconfigure ethical values and demand new analytical frameworks. bio-intimacy: the feminist debate we briefly situate our topic within the feminist debates on reproduc- tive technologies and organ transplantation. feminist scholars have remained critical of the ways that human reproduction and organ trans- plantation entangle with late-modern forms of capitalism (almeling 2009; dasgupta and dasgupta 2010; scheper-hughes 2011). critical of what becomes positioned as the market in reproduction and organs (human eggs, sperm, wombs, kidneys, for example), these scholars note how women’s bodies are fragmented and turned into sellable parts (dickenson 2009; scheper-hughes 2011). meanwhile women’s repro- ductive work is, by feminist scholars, recast as a form of regenerative labour (cooper and waldby 2014) or redefined, in cases of transna- tional commercial surrogacy, as a type of mother-work (pande 2010). the fact that women’s oocytes can enter the reproductive as well as stem cell industry coupled with low or no compensation creates new trajecto- ries for women’s reproductive material. in these accounts, women’s bod- ies become stratified, making some bodies (frequently poorer women and women living in the developing world) bioavailable to other bod- ies (older, wealthier women living in the developed world). as noted by cohen (2004), bioavailable bodies are those based not only on (immu- nological) similarity but also (class, gender, or political) marginality. this argument is echoed by scheper-hughes (2011), in her study of brazilian kidney donors, which critically interrogates how organ traf- ficking follows well-established routes of capital from the south to the north and from the third to the first world. the gift/commodity framework is one of the most frequent dichoto- mies used in bioethical discussions on organ and reproductive exchanges (fox and swazey 1992). dating back to the work of titmuss (1970), gifting is cast as morally superior to forms of market place exchange. in this chapter, we argue that not only is the gift/commodity frame- work inadequate in explaining uterine exchanges and surrogacy; it fails

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192 c. kroløkke and m.n. petersen to acknowledge how gifting and commodification frequently interweave (kroløkke 2018) and instead, we turn to bio-intimacy as an analyti- cal strategy. in fact, we concur with hoeyer (2013: 20), when he notes that a bodily exchange ‘involves more than material redistribution; it revolves around construction of relations—it not only reflects economic value but is also entangled with social relations’. for example, in media debates, the uterus gets positioned as both gendered recyclable material and idle space. key to its disposal and recirculation, in ut cases, the uterus may be seen as unusable matter while it, in cases of surrogacy, becomes vacant. in both cases, the uterus is transformed into having, however temporary, bio-intimate (re)productive value. in developing the concept of bio-intimacy, we build upon femi- nist scholarship and further complicate the gift/commodity frame- work that surrogacy and transplantation often finds itself within. we view surrogacy and ut as involving processes of ‘artefactualisation’ (parry 2007) and ‘thingification’ (lash and lury 2007) encapsulated in what we develop as a bio-intimacy economy in reproductive services. artefactualisation takes place when, as noted by parry, body parts are extracted and become ‘partly technologized and a degree of physical and legal severability is introduced between the donor and the cyborgian entity to which the process gives rise’ (parry 2007: 1136). extraction technologies enact a distance between the body part and the donor, enabling organs, for example, to become artefacts and mobile matter that are on their way into the ‘brave new bio-resource economy’ (parry 2007: 1135). in a similar move, albeit with a very different empirical vantage point, lash and lury (2007) use the concept of ‘thingification’ to illustrate how material objects become global cultural symbols ena- bling not only commodities but also persons to enter commodity states. in their framework, matter becomes mediated as artefacts as well as, at times, made into ‘things’. when uterine exchanges are seen as bio-intimate encounters, they assist in developing a theoretical response to the ways that these exchanges are imagined as well as enacted. intimacy is often construed as a state of being in proximity either through physical closeness, relat- edness, or through emotional alignment. thus, intimacy gets posi- tioned in the private sphere and related to the (heterosexual) family as www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 193 well as the affects of love and care. berlant (1998, 2008) views intimacy from another angle, when she argues that intimacy should be under- stood as some sort of genre, involving hegemonic scripts that circulate in the public sphere and migrate to the private as a feeling of belonging (berlant 2008: ix). likewise, intimacy involves the migration of private feelings into the public sphere, when certain identities and belongings become scripts that form public worlds, making the (public) world fit certain intimate configurations (like the script for heterosexual romance and the desire for the nuclear family) and leaves other configurations (like non-normative relations including turning reproduction into a commercial transaction) non-intimate or callous. in this way, berlant argues, ‘intimacy builds worlds’ (1998: 282). the participants in an intimate public (characterised by the migration between public and pri- vate) are ‘perceived to be marked by a commonly lived history; its narra- tives and things are deemed expressive of that history while also shaping its conventions of belonging; and, expressing the sensational, embodied experience of living as a certain kind of being in the world, it promises also to provide a better experience of social belonging’ (berlant 2008: viii). in ut as well as commercial surrogacy cases, for instance, the ina- bility to carry and give birth to an ‘own’ child moves from the private realm of despair to the public realm of reproductive rights and access. reproductive and transplantation technologies entangle with bio- intimacy in several ways. at the most basic level, ut and surrogacy are technologies that re-enact the ability to create an intimate other— an ‘own’ baby. while biotechnologies are hybrid assemblages that draw upon, yet also enact and create (new) social and affective relations (rose 2007: 16), they simultaneously, we argue, build their legitimacy by drawing upon existing recognisable familial bio-intimate relations, affects, reproductive intent, and medical achievements. ut, for exam- ple, is not simply a medical breakthrough; it is profoundly an interna- tional career-maker to the researchers involved, while it additionally enables recognisable bio-intimate subject positions such as mother (defined here as the woman that gives birth), godmother, and grand- mother. in the case of commercial surrogacy, the bio-intimate encoun- ter between the surrogate and the intended parent(s) is managed by strengthening the bio-intimate relation to the genetically related child,

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194 c. kroløkke and m.n. petersen managing the reproductive labour involved in carrying and giving birth to the child by privileging instead genetic intimacy and reproductive intent. accordingly, bio-intimacy entangles with biotechnologies and an affective economy of desire, intent, and hope, conceptualised by rose (2007) as characteristic of the new citizenship projects. to him, citizen- ship is less linked to nationality and more to genomics and biology. in line with this way of thinking and in our discussion section, we view ut and surrogacy as reproductive citizenship projects embedded within a shared biology of sorts (individuals with no functioning uterus), an affective economy of hope and desire (the hope for pregnancy and the desire for a child), and, as also noted by feminist scholarship, a neo- liberal ideology in which the individual exercises his/her reproductive rights and choice to become a legitimate (active and responsible) repro- ductive citizen. but first a brief overview of the methods employed in this chapter. methodology and analytical framework empirically this chapter combines danish and swedish media texts on ut and surrogacy. in the case of ut, we used the word ‘livmoder’ (english: uterus) and ‘transplantation’, and the database search gen- erated 365 results that were written in either danish or swedish. the comparable search using words for surrogacy generated 4010 danish and 2760 swedish articles and debates. clearly, surrogacy is a more debated topic than ut due to its illegality in both countries. additionally, several recent television documentaries have problema- tised the plight of infertile couples in lieu of the surrogates’ economic interests, making commercial surrogacy in particular a popular as well as contested topic. we used discourse analysis as a method (laclau and mouffe 1985) to understand how ut and surrogacy obtain and circulate meaning and to organise and map the material. all articles were screened accord- ing to relevance and date. we included articles specifically on ut or surrogacy while articles mentioning the search words in other themes www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 195 were excluded. likewise, we excluded articles that replicated other arti- cles already in the material, and we excluded short articles that did not elaborate on the topic, while we included longer articles and opinion pieces that articulated and discussed ethics and politics around ut or surrogacy. this screening narrowed the empirical material to include a total of 22 articles on ut along with three international responses to the swedish utx project (written in english) and a total of 64 arti- cles on surrogacy. the articles were all read with several overall research questions in mind: how are ut and surrogacy described and responded to, and what discourses and affects cluster around the uterus as an exchangeable (whether temporarily as in the case of surrogacy) and disentangled reproductive part (permanently as illustrated in the ut cases)? we mapped the material in relation to these questions as well as how the gift/commodity dichotomy and the altruism/commercialism dichotomy were articulated in the material. in the case of ut, the mate- rial appeared more discursively aligned, and consequently, we analysed this material as one discourse. in the case of surrogacy, the material was more diverse, and therefore, we mapped this material in relation to the way the texts construed the ethics of surrogacy, revealing three distinct discursive positions. these positions were each analysed to lay bare the specific discourses in each position to understand the order of different discourses (jorgensen and phillips 1999: 79–80). in our analysis, we employ the concept of bio-intimacy as a reading strategy. as we re-read the articles, organised in different discourses, we analysed the discourses by asking which kinds of bio-intimacies does this discourse construct? and how do these bio-intimacies frame the debates? the mapping and analysis are methodological grounded. the analytical method granted us insights into what goes on, regarding dis- cursive strategies and the reasons for such structures in particular texts. in what follows, we first turn to surrogacy, before turning to the debates centring ut. whereas the topic of surrogacy was frequently interwoven into the debates on ut, the articles on surrogacy did not make refer- ence to ut as a reproductive option. surrogacy articles revealed, how- ever, discourses in favour as well as against (commercial) surrogacy and as such, constitute a diversified data material.

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196 c. kroløkke and m.n. petersen debating surrogacy: monetary frameworks and the intimate promise of altruism in the swedish and danish debates on surrogacy, three positions are prominent: one in favour of commercial surrogacy, one in favour of altruistic surrogacy but against commercial surrogacy, and lastly one against all forms of surrogacy. in the danish public debates, the position in favour of commercial surrogacy is in minority, though more present than in sweden, where the debates seem to be polarised between those in favour of solely altruistic surrogacy and those opposing all forms of sur- rogacy (munter 2014; nordgren 2014). in both countries the state ethi- cal councils, the swedish the state’s medical-ethical council (smer) and the danish ethical council (der), have published reports on the topic of surrogacy. both reports have the majority recommendation to keep commercial surrogacy illegal but to legalise altruistic surrogacy. in what follows, we analyse the swedish and danish debates about surrogacy looking for similarities and common structures. as both ethical councils recommend altruistic surrogacy, we end with this position in the debates, but firstly turn to the position in favour of commercial surrogacy and then revert to the one against all forms of surrogacy. the position in favour of commercial surrogacy consists of two major discourses. one neoliberal discourse argues that the surrogate should be free to choose for her own body (e.g. juliussen 2015), and one discourse of gay emancipation positions commercial surrogacy as a means to gay male reproductive citizenship (e.g. vestlund 2013; westergaard 2015). two members of the liberal-conservative political party moderaterne echo this latter position, when they write: ‘…gay men are expected to take their societal responsibility by paying taxes to the implemented fam- ily politics without they themselves are given any possibilities for repro- duction’ (johansson and holmström 2010).5 in this position in favour of commercial surrogacy, monetary exchange functions as a security of the surrogate mother’s economic rights and positions her as a worker. surrogacy becomes a liberal job, no different than being employed in a supermarket. as philosopher dan munter (2014) argues: ‘women www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 197 living in difficult financial circumstances, will naturally be more likely to become surrogate mothers than those with good economy. some will also feel compelled to commercial surrogacy and can be used as means for infertile people’s purposes. but this applies to a variety of ethically uncon- troversial transactions, such as those in the labour market, where many are forced to take a stressful or soul-killing job - and where a wealthy woman rarely sits at the counter at ica [a swedish supermarket]’. gestational motherhood and mothering are rarely seen as produc- tive labour and when the liberal discourses in favour of commercial surrogacy position the surrogate in the public sphere of the work mar- ket, the surrogate’s gestational labour is removed from scripts of family intimacy. because (commercial) surrogacy challenges the public/private, production/reproduction, family/market spheres, this set of discourses frequently elevates the surrogate mother’s (intimate) motherhood in relation to her ‘own’ children. kroløkke and madsen (2014: 80) argue that the surrogate mother’s motherhood is affectively framed in rela- tion to her self-sacrifice to secure her ‘own’ children a better future. this maternal framing is prevalent in the position in favour of commercial surrogacy, as we see in the story of the parents through surrogacy daniel and linda jacobsen, where the couple explains that surrogate mothers in india are paid in full and ‘many of the mothers use the money to buy a house or pay for the children’s education’ (sjödin 2011). in this spe- cific bio-intimate economy, monetary exchange works doubly. it secures the nuclear family’s intimacy and the demarcation between the sur- rogate and family members, yet it simultaneously creates a stable sub- ject position for the surrogate and positions her as a good woman and mother to her ‘own’ children. within the position against all forms of surrogacy, we similarly find two major discourses. one in which the biological bond is dis- cursively constructed as a psychological one. if broken, it is seen to severely damage both child and mother (that is the surrogate mother as this discourse understands the surrogate as the mother). a member of der says: ‘during pregnancy a child is not the only thing created, a mother is also created’, and he expresses concerns about ‘the attachment between the surrogate mother and the child’ that can result in a big

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198 c. kroløkke and m.n. petersen sorrow to the mother to give away the child and simultaneously you risk to ‘rob the child from the only mother, it knows’ (martensen 2016). within this discourse the child should not be disentangled from its ges- tational mother (a disentanglement that leads to the baby becoming ‘a thing’). instead, maternity is assembled as the unity of a reproductive body, gestation, birth, and (social) motherhood. echoing the stance against surrogacy, a marxist-feminist discourse is present as well. here altruistic (as well as commercial) surrogacy involves the trading of intimate matter including women’s bodies, reproductive functions, materials, and even children. swedish femi- nist organisations voice this discourse when they, in a joint letter with 28 prominent feminist politicians, academics, lawyers, and leaders of ngos, write: surrogacy is human trade. it is about ordering a child and hiring a wom- an’s uterus. there is a commodity, the child; there is a supplier, the surro- gate mother; and there is a buyer. the conclusion is that surrogacy is and always will be trade of children and trade of women’s bodies. this is true with both commercial as well as so called altruistic surrogacy. (beausang et al. 2014) in this way not only monetary exchanges but also any form of third person reproduction becomes an undesirable trading of women’s bod- ies and children. in this bio-intimate economy, procreation is intimately connected to the female body and her uterus is positioned in an already scripted (and gendered) kinship-making structure involving gestation, birth, and motherhood. in favour of altruistic surrogacy, we find a pragmatic-ethical discourse which, albeit critical towards surrogacy in general nevertheless, views altruistic surrogacy as a means to combat transnational commercial sur- rogacy and regulates the phenomenon as well as a discourse in which surrogacy becomes an exercise in reproductive rights. both ethical coun- cils share the pragmatic-ethical discourse as exemplified in a comment made by of the danish members: ‘the starting point is that we do not want to open up surrogacy. but in light of that, surrogacy has become an industry in india, while it has been very restrictive in denmark, then www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 199 one might swallow some minor camels’ (junker 2013). when viewed as an extension of infertile couples’ reproductive rights, altruistic sur- rogacy, as evidenced in these bioethical and medical discourses, becomes the best way to do surrogacy. a doctor and father through surrogacy echoes this, when he asks, ‘do you seriously think people would mort- gage the house and home and travel halfway around the world, with all the uncertainty that entails, if there was a possibility to become a parent in a controlled manner here in sweden?’ (bengtsson 2013). within the discourses on altruism, a specific bio-intimate economy takes form which models, we argue, hegemonic notions of mother- hood. it is a premise in these discourses that while monetary exchange is damaging for the child, surrogacy is not a form of labour. in fact, when viewed as a type of (re)productive labour, surrogacy is seen to alienate women from their own bodies, turning the reproductive body into frag- mented, commoditised, and available parts (gupta and richters 2008). moreover, as noted by the former head of der, jacob birkler, if a sur- rogate is ‘only interested in the money’ this might make her distanced to the child and thus, ‘damage the child, if she for example smokes or drinks alcohol’ (martensen 2016). in this bio-intimate economy, the surrogate mother, who views her reproductive labour as a type of pro- ductive labour, is made monstrous and selfish, reduced to a ‘container’ of sorts (e.g. wiklund 2010; fahlén and åström 2013; martensen 2016). this metaphor is similar to that of ‘carrier’, commonly used in the positions in favour of commercial surrogacy (nebeling petersen 2015). where the latter metaphor works to stress the view of surrogate moth- ers as labourers (deriving from the verb to carry) and not akin (notice how any kinship mark is linguistically removed, see also nebeling petersen 2015); in the former metaphor the mediated production of a (bodily) subjectivity of the surrogate mother is diminished to that of non-animated thing. in this thingification of both the surrogate moth- er’s uterus and her subjectivity (and one could add, discursive possibil- ity for agency) are demolished. the uterus becomes, in this discourse, an object, a thing, of which someone else is in control, mirroring the rhetorical removal of her subjectivity and agency turning her choices, bodily feelings, and identity work into an empty thing to be wrongfully

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200 c. kroløkke and m.n. petersen filled. this is cemented by the tendency to position commissioning parents who engage in commercial surrogacy as selfish and monstrous, as they in their desire for a child frequently cross not only bodily and national but ethical borders. altruism mediates these monstrosities, however. as echoed by the swedish left party vänsterpartiet, ‘it’s easy to take a stand against the international surrogacy industry, where poor women, for exam- ple in india, support themselves by carrying and giving birth to rich westerners. this is an industry vänsterpartiet obviously should fight. but it does not follow that surrogacy always is exploitative. the pre- requisite for this is that it is based on altruism, not on economic dependence or social pressure’ (brunius et al. 2011). the right to self- determination and autonomy is, as echoed by vänsterpartiet, secured through altruism. thus, the promise of altruism works by unifying the disturbances and fragmentations surrogacy creates. by placing altruistic surrogacy in the family or with close friends, the nuclear family is re- assembled and motherhood becomes once again related to heterosexual kinship. hegemonic scripts of womanhood structures how surrogacy should be arranged and which actors it should involve. having dis- cussed key discourses in the swedish and danish debates on surrogacy, we turn to the ways that ut is debated. debating ut: recycling reproductive matter and restoring reproductive lives at the age of 22, anna was diagnosed with cancer and three years later her uterus was, she recounts in her own story published at sahlgrenska academy home to the utx, ‘forcefully’ removed (anna 2014). the transplantation of her mother’s uterus grants anna hope, that one day she will be able to carry her own child to term, while importantly, restoring her body into its previously normative state. ‘to me it is also about replacing a bodily function that i have previously had and that i need to become pregnant. the same technique that once took my uterus, can now give me a uterus back’ (anna 2014). in this section, we www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 201 turn to an analysis of the danish and swedish debates on ut and note how ut becomes a replacement in body parts enabling anna to, once again, become fully (re)productive, an exemplar of what rose (2007) calls optimisation and enhancement involving the promise of a hopeful future. based on the empirical material, we highlight three discourses that all centre the bio-intimacy of the existing family-kinship structure. the fact that the swedish utx project employs healthy and, in sev- eral cases, biologically related and older female donors, is not only medically ground-breaking but grants, in the stories, the uterus new biovalue (waldby 2000). here the uterus departs from its status as an idle, non-reproductive organ to becoming a family property and a gen- eration builder of sorts. brännström comments upon this in an inter- view to the associated press following the first birth of a baby born from the grandmother’s uterus, saying ‘it’s one uterus bridging three generations of a family’ (associated press 2015). in this story, a photo displaying a baby surrounded by two women (presumably the new mother and grandmother) reiterates the grandmother’s decision as immediate yet governed by affects of gratitude and love: ‘was crying and told her i loved her and thank you for doing this’, the mother recounts (associated press 2015). while the grandmother is described as a ‘proud’ woman in her mid-fifties, her surgery is defined as technically complicated involving the cutting and re-activating of major arteries and veins—a surgical triumph yet also a form of bio-intimacy in which the mother-daughter bond is re-naturalised and extended to include a ‘special’ bond between the grandmother and the newborn grandson: ‘it’s a big thing and he and his grandmother will have this bond for the rest of their lives’ (associated press 2015). moreover, the bio-intimacy rela- tion is extended to that of the doctor–patient relation in choosing to give the baby the name mats (bränströmm’s first name) as its middle name. the bio-intimacy of ut restores a particular straight temporal- ity in the production of one’s own children including that of a uni- fied, maternal reproductive body. in her account, anna recalls the loss of her uterus as involving the loss of a particular temporality, what queer scholar judith jack halberstam terms ‘the time of reproduction’ (2005: 5): finishing school, getting a 7 to 4 kind of job, and building

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202 c. kroløkke and m.n. petersen a family (anna 2014). similarly, christine—a danish woman hop- ing to undergo ut in sweden recounts how the results of her cancer treatment disrupted the temporality of finishing her education, find- ing a good boyfriend, a proper job, and then becoming pregnant. consequently, the desire for a child along with what can be viewed as this new supplemental uterus gets reinstated as a natural extension of conventional life stages, broken abruptly by what is depicted as an unfair disease. meanwhile, in the danish debates, the unified maternal body is cast as preferable to the fragmented mother frequently associ- ated with surrogacy. lillian bondo, member of der, echoes the desire for women to carry their own child, while the then head of the council, jacob birkler, contrasts ut favourably to surrogacy. according to him and compared to ut, surrogacy does not allow the child to have the ‘same benefits of growing up with the mother who is also giving birth to the child’ (lind 2014). ut is, in this manner, cast as granting not only the woman a chance of biological motherhood but in these stories, emotional, and biological attachments come together to position ut as preferable—even as far as the child’s welfare is concerned. ut is, throughout the stories, normalised within the confines of a romantic heterosexual relationship as well as in the positioning of infer- tility as a disease. in a recorded chat (‘chatta om livmodertransplan- tationer’ 2012) between one of the utx researchers and the swedish public, liza johannesson goes to great lengths to normalise and legiti- mise ut. according to johannesson, infertility is defined by who guidelines as a disease, while the uterine transplant recipients are described as women who have own ovaries, own eggs, and long-term partners. all they need is a uterus. accordingly, in this chat, questions pertaining to both the legitimacy of ut as a normative and expensive reproductive practice (‘a typical 1st world problem with an absurd solution’, as emmalis comments in the chat) as well as its potential in offering men the ability to give birth to children (‘a uterus for men is just a stroke of genius! you should really work on this’, erik says in the chat) are, by johannesson as she answers in the chat, resolved within the confines of the heteronormative family structure. johannesson notes that ‘all the women who participate in the uterine transplant project at sahlgrenska hospital have ovaries and own eggs. these are fertilised with www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 203 their partner’s sperm and the woman carries the pregnancy. the child is therefore genetically the couple’s child’. in this discourse, ut restores what becomes situated as a genetic bio-intimacy (ovaries and eggs) as well as that of legitimate heterosexual bodies (partner’s sperm and the woman who carries her own pregnancy). motherhood in ut cases gets positioned as inherently residing in pregnancy and childbirth, privileging the idea that reproductive work must equal the intent to parent. when combined with their own genetic material, ut recipients are turned into rightful and legitimate mothers. the fact that an ut pregnancy necessitates immune suppres- sant medication and is always planned to result in a caesarean deliv- ery is made to appear legitimate when put in close proximity to women who have undergone (other) life necessary treatments such as kidney transplants, yet nevertheless achieve pregnancy and birth. meanwhile, the exchangeability of the uterus, including the various reproductive paths made possible, are managed and directed at particular women only. this is in spite of the fact that the uterus clearly, through its extraction and exchangeability, opens up for new providers and recipi- ents alike. as noted in one danish article, transgendered men can be granted the option, during sex reassignment surgery, to donate their uterus. here the uterus moves from the classification of reproductive waste (‘we throw out about 20 well-functioning uteruses every year’, the physician notes in reference to sex reassignment surgeries), or a road- block. ‘in reality, it was just mostly in the way’, one transgendered man comments in reference to the potential ability for his uterus to become thingified and gain new value as someone else’s reproductive organ. ‘it’s not like dna, like with sperm or eggs, but just a case for the foetus. i would have liked to have given it to someone who needed it’ (pabst 2016). these types of exchanges are, however, likely limited not only due to the lack of danish ut expertise but also due to danish legal restrictions which makes no specific mentioning of uterine transplants, yet specifies that transplanting another person’s ovaries to a recipient with the specific purpose of assisted reproduction is illegal.6 the stories and debates are united through affects of hope engen- dering particular understandings of ut as similar to other types of replacement surgeries. anna, for example, positions the replacement of

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204 c. kroløkke and m.n. petersen her mother’s uterus into her own body as not only ensuring a chance at pregnancy and children, but in her story the uterus becomes key to her woman-ness. she says, if i had had breast cancer and wanted a new breast, no one would have objected (anna 2014). anna’s desire and hope is, thus, doubly: to have an ‘own’ child and through pregnancy to reinstate her woman-ness. to franklin (1997) and rose (2007), repro- ductive technologies are gendered ‘hope technologies’ as well as always future-oriented in their focus. hope interlinks, novas (2006) argues, with diverse actors. the hopes of patients and their relatives are inter- linked with the hopes of scientists for medical breakthroughs and career advancements and the hopes of hospitals for high international standing and recognition. in the ut cases, hope is intricately interwoven with conventional ideas on motherhood as a natural destiny, predicated upon the notion of the uterus as a supplement, or an artefact, extractable and exchangeable between women. bio-intimacy and supplementarity: surrogacy and ut as new citizenship projects in this section, we discuss what altruism and keeping it in the family does to our understandings of surrogacy and ut. altruism is a common trope that combats ethical questionable forms of surrogacy and ut. in the case of surrogacy, altruism is understood by a majority of the ethi- cal board members as an ethical solution. for example, smer writes, ‘surrogacy should only be legal when the woman has a close relation to the potential parents (daughter, son, sister, brother or close friend)’ (asplund et al. 2013). likewise, in reference to altruistic surrogacy the der notes, ‘typically, it will be a woman from the couple’s family or circle of friends’ (danish ethical council 2008). altruism and gift- giving turn the surrogate mother and the act of surrogacy into socially and ethically acceptable acts. in the case of ut, altruism is not only a prerequisite but an underlying assumption as well as distanced from any concerns related to social pressures. in this bio-intimate economy, the act of altruism secures that the uterine provider is properly and www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 205 affectively motivated in terms of feminised affective labour. she per- forms a recognisable form of motherhood, characterised by self-sacrifice, humility, and devotion. in both sets of debates, reproduction gets positioned as rightfully belonging within the intended and/or extended family. in the case of utx, the first successful birth was the result of a 61-year-old family friend, described by the recipient couple following their son’s first birth- day as an ‘incredible’ person who made a contribution ‘without any payments or anything: just good will’ (orange and macrae 2015). in the article, the provider is depicted as seeing the baby as her seventh miracle (following the birth of her own two sons and four grandchil- dren), thus, taking up a legitimate and gendered position as maternal protector and caregiver. she enters the bio-intimacy economy inter- estingly as a known, yet still fairly invisible background figure, over- shadowed in the text by the father’s naturalised quest to have his own children (‘a former competitive golfer, who refused to accept he would never have children’) and the mother’s desire for—and later fulfilment of ‘own’ motherhood (‘i couldn’t wish for more’) (orange and macrae 2015). meanwhile, in ut as well as in altruistic surrogacy cases, the uterine provider becomes a natural gift-giver. she is repeatedly put in close proximity to the intimate gendered positions of friend, mother, godmother, and grandmother. in these accounts, reproduction becomes re-positioned as a citizen- ship project. reproductive rights and choice can be positioned within what rose (2007: 154) terms the regime of the self, referring to the enter- prising individual who actively shapes his/her life course. in western late-capitalist societies, david eng (2010: 109) argues, having a child serves as a guarantee for full and robust citizenship and for being rec- ognised as a subject who has realised him- or herself economically, politically, and socially, and as halberstam (2005: 5) notes, has entered adulthood. both surrogacy and ut enable this promise and possibility of citizenship to infertile hetero- and homosexual couples and individ- uals. in cases of surrogacy, swedish national and local gay and lesbian organisations have raised the question of legalisation of surrogacy to be a question about gay rights, and especially a question about repro- ductive citizenship to gay males. meanwhile, danish gay and lesbian

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206 c. kroløkke and m.n. petersen organisations have been quiet, but the question about gay male repro- ductive citizenship has emerged in the danish debates in relation to nar- ratives about gay couples, who have had children or who dream about having children through surrogacy. surrogacy enables such a citizenship project, as voiced by the neoliberal discourse in particular. the bio-inti- mate economy of altruism frames this project within an already scripted heteronormative kinship-making structure. although ut is not debated as a citizenship project, the technology is re-situated as a form of patient rights combined with the right to motherhood through the replacement of the uterus as a necessary organ and the renaturalisation of mother- hood. although highly complicated, the technology of ut appears less ethically problematic than surrogacy. where surrogacy emerges as a dis- turbance, if not a destruction, of the heteronormative bio-intimacy of procreation, and thereafter becomes stabilised in the promise of altru- ism and the following re-organising of the unified family, ut emerges as already embedded within the heteronormative bio-intimacy of altruism and the promise of keeping reproduction within the family. uterine exchanges reveal how new links are continually made between reproduction/medicine/commerce and underscore how reproduction, and the struggle over cultural meanings, is always political. whereas the uterus in ut cases gets positioned as vacant and potentially going to waste (bharadwaj 2012), when extracted or employed by the recipient woman, the uterus is recycled in what comes to be understood as a meaningful way. uterine exchanges involve what bharadwaj (2012) refers to as a supplemental detour. in the case of ut, the supplemental detour necessitates the perma- nent removal of an organ, which is temporarily (and for a maxi- mum of two pregnancies) positioned in another female recipient kin body—keeping reproduction within the recognisable genetic bio- intimate encounter of the (extended) family. in cases of commercial surrogacy, the surrogate (not only the uterus but the whole person) is positioned as a temporary substitute or proxy (bharadwaj 2012). whereas the uterus, in ut cases, is temporarily transplanted for a maximum of two pregnancies and then extracted and discarded; in commercial surrogacy cases, the supplement surrogate mother is erased. her supplemental body is employed for the gestational time www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 207 period only, thus, separating reproduction from the bio-intimate relations of the family. in contrast, the promise of altruism within debates on surrogacy functions as way to re-entangle surrogacy within the family, and demarcates monetary exchanges from the acts of reproduction. conclusion from the concept of bio-intimacy, we depart through the gift/commodity framework that the discussion of bioethics often finds itself in and propose instead that intimacy plays a vital part of the eth- ics on uterine exchanges. on the one hand, ut and surrogacy both dramatically change the intimate scripts and choreographies of having children and procreation, yet these reproductive technologies simultane- ously become ethically legitimate forms of assistance by being embed- ded in already organised structures of intimacy. the gift/commodity dichotomy is such a structure. when the repro- ductive technologies of ut and surrogacy are positioned within a commodity framework, the intimate feelings and relations between the actors (donor/surrogate, commissioning parents, child, and staff) are ‘un-intimised’ by placing these encounters within a public of market, self-interest, and monetary economies. meanwhile, when the technolo- gies are positioned within a gift-giving framework, the technologies are ‘intimised’ by being embedded within hegemonic structures of inti- macy (the heterosexual family and kinship) as well as being embed- ded with a female intimate public, where the female donor/surrogate is promised a better belonging to an intimate public of woman-ness by abiding to a hegemonic script of feminised intimacy characterised by traditional female attributes of self-scarification, gift-giving, and family-devotion. in the bio-intimate economy of uterine exchanges, money is not only a mark of non-intimacy, but also of non-woman- ness. this is in sharp contrast to the promise and ethics of altruism, which functions as stabilisation of procreative disturbances enabled by new technologies.

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208 c. kroløkke and m.n. petersen notes 1. we use ut to refer to uterine transplantation in general. 2. we use utx to specifically refer to the swedish uterine transplantation project. 3. absolute uterine factor infertility (aufi) includes women who have no uterus either from birth, as part of the mayer–rokitansky–kuster– hauser (mrkh) syndrome, or after hysterectomy for cervical malig- nancy or due to severe obstetric bleeding that necessitate removal of the uterus. according to brännström, this includes an approximate 4500 aufi women in the nordic countries. 4. in denmark and sweden surrogacy exists within a grey zone, when legal regulations make purchasing commercial gestational surrogacy impossi- ble. most notably in denmark the commissioning parents are violating the danish law against advertising and arranging surrogacy. it is illegal for swedish medical clinics to facilitate surrogacy, though not explicitly illegal for commissioning parents to arrange surrogacy abroad. most commissioning parents experience vast legal difficulties bringing the child home and naturalising the child. 5. all quotes from danish and swedish articles have been translated into english by the authors. 6. the danish law on assisted reproduction 2013, §11. available from https://www.retsinformation.dk/forms/r0710.aspx?id=167647 [15 august 2016]. references almeling, r. (2009). gender and the value of bodily goods: commodification in egg and sperm donation. law and contemporary problems, 72(3), 37–58. anna. (2014, october 23). “annas” egen berättelse’ [‘anna’s own story], smer.se. retrieved august 15, 2016, from http://sahlgrenska.gu.se/forskning/uterus/ patientberattelse. asplund, k., eriksson, l., & hermerén, g. (2013, october 16). efter smers rapport: livlig samhällsdebatt om assisterad berfuktning [‘after the smer report: lively public debate about assisted reproduction’], smer.se. retrieved august 15, 2016, from http://www.smer.se/artiklar/efter-smers-rapport-liv- lig-samhallsdebatt-om-assisterad-befruktning/. www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 209 associated press. (2015, august 25). swedish woman who gave birth after womb transplant from own mother speaks of joy. the telegraph. retrieved august 15, 2016, from http://www.telegraph.co.uk/news/worldnews/ europe/sweden/11824261/swedish-woman-who-gave-birth-after-womb- transplant-from-own-mother-speaks-of-joy.html. beausang, a. et al. (2014, june 23). aldrig en rättighet att köpa ett barn [never a right to by a child], aftonbladet. retrieved august 15, 2016, from http:// www.aftonbladet.se/debatt/article19102125.ab. bengtsson, a. (2013, march 2). surrogatfödda barn mår inte sämre än andra [children born trough surrogacy are no worse than other’], svenska dagbladet. retrieved august 15, 2016, from http://www.svd.se/surrogat- fodda-barn-mar-inte-samre-an-andra/om/debatt. berlant, l. (1998). intimacy: a special issue. critical inquiry, 24(2), 281–288. berlant, l. (2008). the female complaint. durham: duke university press. bharadwaj, a. (2012). the other mother: supplementary wombs and the sur- rogate state in india. in m. knect, m. klotz, & s. beck (eds.), reproductive technologies as global form: ethnographies of knowledge, practices, and transna- tional encounters (pp. 139–160). frankfurt: campus verlag. brännström, m. (2015). the swedish uterus transplantation project: the story behind the swedish uterus transplantation project. aogs. acta obstetricia et gynecologica scandinavica, 94(7), 675–679. brunius, å., lindberg, j., esteche, a., hagelstedt, å. & stenudd, s. (2011, april 6). surrogatmödraskp kan visst funka! [surrogacy might work1]. flamman. http://flamman.se/_a/surrogatmodraskpa-kan-viss-funka. chatta om livmodertransplantationer [chat about uterine transplantations]. (2012). dagens nyheter, 20. september. retrieved august 15, 2016, from http://www.dn.se/chattar/chattarkiv/chatta-om-livmodertransplantationer/. cohen, l. (2004). operability, bioavailability, and exception. in a. ong & s. j. collier (eds.), global assemblages: technology, politics, and ethics as anthro- pological problems (pp. 79–90). malden, ma: blackwell. cooper, m., & waldby, c. (2014). clinical labor. tissue donors and research subjects in the global bioeconomy. durham, nc: duke university press. danish ethical council. (2008, may 21). det etiske råds udtalelse om rugemødre [the ethical council’s statement on surrogate mothers’]. det etiske råd. retrieved august 15, 2016, from http://www.etisk- raad.dk/~/media/etisk-raad/etiske-temaer/assisteret-reproduktion/ publikationer/2008-05-21-udtalelse-om-rugemoedre.pdf. dasgupta, s., & dasgupta, s. d. (2010). motherhood jeopardized: reproductive technologies in indian communities. in w. chavkin &

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210 c. kroløkke and m.n. petersen j. m. maher (eds.), the globalization of motherhood: deconstructions and reconstructions of biology and care (pp. 131–153). new york: routledge. dickenson, d. (2009). body shopping: converting body parts to profit. oxford: oneworld books. eng, d. l. (2010). the feeling of kinship: queer liberalism and the racialization of intimacy. durham, nc: duke university press. fahlén, m., & åström, g. (2013, february 8). kvinnors kroppar är inte bara en behållare [women’s bodies are not just containers]. svenska dagbladet. retrieved august 15, 2016, from http://www.svd.se/kvinnors-kroppar- ar-inte-bara-en-behallare. fox, r., & swazey, j. p. (1992). spare parts: organ replacement in american society. new york: oxford university press. franklin, s. (1997). embodied progress: a cultural account of assisted conception. london: routledge. gupta, j., & richters, a. (2008). embodied subjects and fragmented objects: women’s bodies, assisted reproduction technologies and the right to self- determination. bioethical inquiry, 5(4), 239–249. halberstam, j. (2005). in a queer time and place: transgender bodies, subcultural lives. new york: new york university press. hoeyer, k. (2013). exchanging human bodily material: rethinking bodies and markets. new york: springer. johansson, u., & holmström, s. (2010, may 30). tillåt kvinnor bliver surro- gatmödrar [allow women to become surrogate mothers]. svenska dagbladet. retrieved august 15, 2016, from http://www.svd.se/tillat-kvinnor-bli-surro- gatmodrar/om/debatt. jorgensen, m. w., & phillips, l. (1999). diskursanalyse som teori og metode. roskilde: roskilde universitetsforlag. juliussen, s. (2015, december 1). rugemødre—ja tak! [surrogate mothers— yes, please!]. søren juliussen’s blog. retrieved august 15, 2016, from http:// sorenjuliussen.dk/2015/12/01/rugemoedre-ja-tak/. junker, s. (2013, december 18). flertal i etisk råd åbner dør på klem for sur- rogatmødre [majority opens the door for surrogate mothers]. information. retrieved august 15, 2016, from http://www.information.dk/482390. kroløkke, c. (2018). global fluids. the cultural politics of reproductive waste and value. new york: berghahn press. kroløkke, c., & madsen, k. h. (2014). moderskab(elser)—slægtskabsøkonomier og moderfølelser i transnational surrogatmoderskab [making motherhood— kinship economies and mother feelings in transnational surrogate mother- hood]. kvinder, køn & forskning, 14(1–2), 70–81. www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 211 laclau, e., & mouffe, c. (1985). hegemony and the social strategy. london: verso. lash, s., & lury, c. (2007). global culture industry: the mediation of things. malden, ma: polity. lind, l. e. (2014, june 3). etisk debat om livmoderdonation [ethical debate on uterine transplantation], etik.dk. retrieved august 15, 2016, from http:// www.etik.dk/danmark/2014-06-03/etisk-debat-om-liv-moder-donation. martensen, n. (2016, january 11). etisk råd-formand: det reducerer kvinden til en beholder til børn [head of ethical council: it reduces the woman to a container for children]. politiken. retrieved august 15, 2016, from http:// politiken.dk/indland/ece3009696/etisk-raad-formand-det-reducerer-kvin- den-til-en-beholder-til-boern/. munter, d. (2014, may 9). avfärda inte kommersiellt surrogatmödreskap [do not dismiss commercial surrogacy]. dagens arena. retrieved august 15, 2016, from http://www.dagensarena.se/opinion/dan-munter-avfarda-inte- kommersiellt-surrogatmodraskap/. nebeling petersen, m. (2015). moren er død, moren leve. kampen om moder- skab hos homoseksuelle mænd [the mother is dead, long live the mother. the battle of motherhood among homosexual men]. kvinder, køn & forskning, 15(2): 34–48. nebeling petersen, m., kroløkke, c., & myong, l. (2016). dad and daddy assemblages. re-suturing the nation through transnational surrogacy, homosexuality, and norwegian exceptionalism. glq—a journal of gay and lesbian studies, 23(1), 42. nordgren, m. (2014, june 13). surrogatmödraskap het fråga på kvinnokonfer- ence [surrogacy a heated question on women’s conference]. dagens nytheter. retrieved august 15, 2016, from http://www.dn.se/livsstil/surrogat- modraskap-het-fraga-pa-kvinnokonferens/. novas, c. (2006). the political economy of hope: patients’ organizations sci- ence and biovalue. biosocieties, 1, 289–305. orange, r., & macrae, f. (2015, september 20). ‘celebrating turning one, the first baby born after womb transplant: mother speaks of ‘fantastic feel- ing’ following pioneering project that saw four children born’. the daily mail. retrieved august 15, 2016, from http://www.dailymail.co.uk/news/ article-3242477/celebrating-turning-one-baby-born-womb-transplant- mother-speaks-fantastic-feeling-following-pioneering-project-saw-four- children-born.html. pabst, m. (2016, february 4). christine vil føde barn med en anden kvin- des livmoder [christine wants to give birth with another woman’s uturus],

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212 c. kroløkke and m.n. petersen kristeligt dagblad. retrieved august 15, 2016, from http://www.kristeligt- dagblad.dk/danmark/danske-kvinder-kan-snart-foede-med-en-andens- livmoder. pande, a. (2010). commercial surrogacy in india: manufacturing a perfect mother-worker. signs: journal of women in culture and society, 35(4), 969– 992. parry, b. (2007). entangled exchange: reconceptualising the characterisation and practice of bodily commodification. geoforum, 39, 1133–1144. rose, n. (2007). the politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. princeton: princeton university press. scheper-hughes, n. (2011). mr tati’s holiday and joao’s safari—seeing the world through transplant tourism. body & society, 17(2–3), 55–92. sjödin, a. (2011, may 16). de fick barn via surrogatmamma i indien [they had a child via surrogate mother in india], arbetarbladet. retrieved august 15, 2016, from http://www.arbetarbladet.se/allmant/de-fick-barn- via- surrogatmamma-i-indien. titmuss, r. m. (1970). the gift relationship: from human blood to social policy. london: allen & unwin. vestlund, j. (2013, january 17). surrogatmödraskap—en vigtig hbt-fråga i sam- tiden [surrogacy—an important contemporary question]. qx. retrieved august 15, 2016, from http://www.qx.se/samhalle/debatt/22547/surrogat- modraskap-–-en-viktig-hbtfraga-i-samtiden. waldby, c. (2000). the visible human project: informatic bodies and posthuman medicine. london: routledge. westergaard, t. (2015, november 30). barnløse bøsser kæmper for retten til at få børn [childless gay men fight for the right to get children]. dr. retrieved august 15, 2016, from https://www.dr.dk/nyheder/indland/barnloese- boesser-kaemper-retten-til-faa-boern. wicklund, l. (2010, october 12). surrogatmödraskap har blivit en global indus- tri [surrogacy has become a global industry]. dagens nyheter. retrieved august 15, 2016, from http://www.dn.se/insidan/surrogatmodraskap-har- blivit-en-global-industri/. authors’ biography charlotte kroløkke is professor in the department for the study of culture at the university of southern denmark with special responsibilities in feminist cultural analyses of reproduction and reproductive medicine. www.ebook3000.com

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8 keeping it in the family: debating the bio-intimacy … 213 michael nebeling petersen is assistant professor at the university of southern denmark. his work is about transnational surrogacy in a queer and feminist framework. working within two research projects, reproductive medicine and mobility and new medias, new intimacies, his research centres questions about culture, power, and identity, most notably on gender, sexu- ality, race, and nation. he is especially interested in how transnational surro- gacy is changing cultural practices, understandings, and possibilities of kinship, identity forms, and ways of belonging.

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9 gift-of-life? the psychosocial experiences of heart, liver and kidney recipients geraldine o’brien we are left to invent a new way of being human where bodily parts go into each other’s bodies, redesigning the landscape of boundaries in the habit of what we are so definitively used to call (sic) distinct bodies … my life in its contingency mirrors the history of techniques, the growing know-how about human bodies, which knows nothing about the lived-bodies that can and will come from it. (varela 2001: 260–261) advances in transplant medicine have made it possible to preserve and extend the life of individuals with end-stage organ disease. sharp (2001) notes, however, that the biomedical view of organ transplanta- tion as a bounded event, which ends once a heart, liver or kidney is suc- cessfully replaced, belies the complex, dynamic and generative process that more accurately represents the experience of receiving an organ. having incorporated the body part of another person into their own body, recipients must deal with the blurring of many boundaries: the complexities of immunosuppression, as well as the challenges of a g. o’brien (*) murdoch university, perth, wa, australia e-mail: brien@murdoch.edu.au © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_9 www.ebook3000.com 215

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216 g. o’brien compromised sense of personhood (kierans 2011). as crowley-matoka (2005) emphasises, life does not return to “normal” for organ recipients; at least not the pre-illness state of normal many believe to be the prom- ise of the ‘gift-of-life’. instead, they may live in persistent liminality, where they are caught ‘betwixt and between’ the roles of healthy/inde- pendent/normal person, and those of ill/dependent patient. in short, there is a chasm between the biomedical perspective of organ trans- plantation as a bounded event and the lived reality for many transplant recipients, which is an ongoing process of negotiating, and re-negotiat- ing, normality. in the quote above francisco varela (1946–2001), chilean biologist, philosopher and neuroscientist, reflects on his personal experience of receiving a liver transplant. in doing so, he emphasises the gulf between modern medicine’s capacity to act on and repair the human body via sophisticated biotechnologies, and an understanding of how such tech- nologies are subsequently enacted as lived-bodies. as varela (2001: 261) peers inside himself at ‘the other’s liver’ and contemplates what has tran- spired, he suggests that his situation can be considered in terms of sen- timental extremes: as ‘being touched by ‘a gift’ (from somewhere, from ‘life’ or ‘god’), or else the simplicity of the doctors who remain set at the level of their technical prowess’, with the lived phenomenon lying somewhere between these extremes. his reference to ‘the other’s liver’ as ‘a gift’ (at one end of the spectrum of sentimental extremes) reflects the broadly held understanding of donated organs, within both the medi- cal and public spheres, as the gift-of-life. his assertion that organ trans- plantation could also be considered no more than a demonstration of current medical knowledge and surgical technique (at the opposite end of the spectrum) is not one that is encouraged within the realm of trans- plantation. gift-of-life gift-of-life is the sanctioned metaphor of organ donation (fox and swazey 2002). in mauss’s (1970) understanding of gift exchange theory (get), which is routinely utilised as a framework for conceptualising

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9 gift-of-life? the psychosocial experiences … 217 the exchange that takes place in the context of transplantation, gift- giving entails a social contract based on three principles: the obligation to give, to receive and to reciprocate. following mauss, a number of social scientists (e.g. fox and swazey 2002; gill and lowes 2008; sque and payne 1994) have argued that as organ donation does not involve a monetary transaction, sociologically and psychologically, donated organs can be thought of as gifts in the maussian sense. accepting that donated organs can be understood as ‘free gifts’, what then of the three interlocking principles (to give, to receive and to recip- rocate) on which gift exchange is premised? fox and swazey (2002) suggest that although the organ donation system is founded upon the tenets of voluntarism and altruism, the perception of organs as gifts freely given and received is erroneous. cultural mores suggest that if the relevant circumstances present themselves, the (morally) correct response for potential donors’ families is to give. similarly, the immense need of the potential recipient means that the person is obligated to receive an organ if one is offered. this leaves the obligation to recip- rocate, arguably the most problematic feature of the gift-of-life meta- phor. having received a ‘gift’ of inestimable value, the recipient feels they must reciprocate in order to fulfil the terms of the social contract into which they entered upon receiving the gift. in the case of cadav- eric donation, the donor of the organ is no longer alive, and the debt incurred via the receipt of the gift cannot be directly repaid. although some actions, such as expressing gratitude to the donor family and/or helping others through support groups, might go some way towards alleviating the sense of indebtedness, none of these is likely to be under- stood as sufficient reciprocation for the priceless gift received. this may feel onerous for the recipient and give rise to the ‘tyranny of the gift’, as fox and swazey (2002) point out. sothern and dickinson (2011) have likewise explored the ways in which the obligation to reciprocate manifests in recipients’ lives, and how this is interpreted given that transplantation does not return recipients to a state of ‘perfect’ health, but rather represents the trad- ing of one set of health problems (those associated with organ failure) for another (those associated with immunosuppression). they argued that, by virtue of organ scarcity (and therefore the value inherent in www.ebook3000.com

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218 g. o’brien ‘the gift’), recipients are compelled to assume practices of self-care that are, in effect, a form of reciprocation (i.e. an appropriate ethical/moral response for the gift received). as sothern and dickinson (2011) define it, care is a relational practice: a shared accomplishment that involves others (including unknown others), institutions and technologies in complex relationships. they suggest that such practices are owed to the broader community, including the donor/donor family, prospective recipients, those who will not ever receive an organ, healthcare profes- sionals and all of the various ‘systems’ entailed in transplantation. by complying, the recipient demonstrates both worthiness of, and reci- procity for, the gift received. this prescribed way of caring for the gift, however, does not necessarily allow for the full scope of the transplant experience to be acknowledged by the recipient. it has been argued that adoption of the term ‘gift-of-life’ is aimed at metaphorically reworking human organs and the practice of transplanta- tion such that the reality of the organ’s origin is obscured, or imaginatively ‘mystified’, and the moral unease associated with the practice of trans- plantation is quelled (sharp 2001). many scholars posit (e.g. shaw et al. 2012; siminoff and chillag 1999; sothern and dickinson 2011) that the scarcity issue underlies the ubiquitous use of the gift-of-life metaphor across donation campaigns (with a view to increasing donation rates) and healthcare settings (with a view to ‘enforcing’ recipients’ compliance with immunosuppression regimens and other post-transplant treatment). while the metaphor serves to foreground some aspects of transplanta- tion such as the potential to ‘save’ lives, it relegates the death of the donor, inherent risks of the surgical procedure, possibility that the ‘new’ organ might fail to function or be rejected, and the numerous difficulties of liv- ing with a transplanted organ, to the background (gunnarson 2012). psychosocial experiences of organ transplantation this chapter is based on research undertaken as part of a phd project at murdoch university in australia, exploring the lived experience of organ transplantation and how recipients’ and prospective recipients’

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9 gift-of-life? the psychosocial experiences … 219 understandings of the gift-of-life metaphor relate to their transplanta- tion experience. although used interchangeably in the context of trans- plantation, the terms ‘gift’ and ‘donation’ represent different forms of giving. while the former initiates a form of social contract that entails reciprocation, the latter does not (douglas 1992). in this chapter, i examine reciprocity in the context of organ transplantation, with par- ticular reference to the concept of gratitude and how it pertains to the receipt of ‘a gift’ of such magnitude. i begin the discussion by briefly describing those who participated in my research, followed by three individual sections in which i discuss the experience of heart recipients, liver recipients and prospective kidney recipients, respectively. all participants have undergone what might, on the surface, appear to be the same experience (i.e. waiting for, and/or receiving an organ transplant). however, i found their experiences to be diverse. i did not encounter one, homogenous, group of transplant recipients/prospective recipients but instead, individuals who spoke about their experience of transplantation in strikingly different ways. while divergence was evident across the sample, i found considerable convergence within the particular organ-groups (i.e. heart, liver and kidney) and posit that the particular organ being received has distinct implications for the psychosocial/affective experience of transplantation. the research the study on which this chapter is based was conducted in western australia between 2010 and 2014, with participants recruited from the transplant units of two large metropolitan hospitals. the study received institutional ethics clearance from the two hospitals and from the murdoch university human research ethics committee (2009/240, 13 may, 2010). participants were voluntarily recruited from a list of patients who had received an organ transplant or were on the waitlist to receive an organ transplant and were deemed healthy enough to be interviewed. data-gathering extended over a period of 14 months, with the final analysis based on the semi-structured interviews of 30 organ recipients/ www.ebook3000.com

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220 g. o’brien prospective recipients: 13 heart and six liver recipients, and one liver and ten kidney prospective recipients. participants ranged in age from 35 to 76 years, and time since transplant varied from 10 weeks to 11 years. one participant had received two transplants (his first liver transplant having failed after 6 weeks), while another had received a liver transplant and, 2 years later (after experiencing recurrent liver problems), was on the waitlist for a second. all prospective recipients were on transplant waitlists, and one received an organ during the course of the study. all those on the kid- ney transplant waitlist were on dialysis, with time on dialysis ranging from 6 weeks to 5 years. one of the prospective kidney recipients had received a (live) kidney donation from a relative but after a short time the kidney failed, and she was on the waitlist for a second transplant. the final data corpus comprised 42 interviews, ranging in length from approximately 20 min (a follow-up interview) to 2 h and 15 min. interpretative phenomenological analysis (ipa) was adopted as a rel- evant mode of analysis (smith 2011). ipa is an idiographic approach that privileges the individual and also recognises the active role of the analyst in accessing an in-depth account of a particular experience (pringle et al. 2011). analysis proceeded through a process of read- ing participants’ narratives, noting initial themes. narratives, extracts and accompanying notes were re-read (many times) to develop a final account in which recurring and interconnected themes, both within and across narratives, were described. the names of all participants referred to herein are pseudonyms. deservingness: the gift of a heart regardless of whether they are perceived to be donations or gifts, organs for transplant vary along a number of dimensions that have important implications for the experience of transplantation. these include, but are not necessarily limited to: the basis for need, social worth and sym- bolic weight (sharp 1995). across all of these dimensions, sharp (1995) argued, hearts can be considered amongst the most valuable of organs. in terms of need, hearts are life-saving organs and those on the waitlist

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9 gift-of-life? the psychosocial experiences … 221 for a heart will die if a donated organ does not become available in a timely manner. as regards social worth, fewer hearts are available for transplant and it is surgically more difficult to replace a heart (than a kidney, for example). these factors lead to hearts having a higher social value. however, it is perhaps in terms of symbolic weight that hearts can be most differentiated from other organs for transplant. hearts are ‘linked to selfhood by being traditionally considered as harboring the feelings and character of the person, a cultural factum that is heavily inscribed in human languages by powerful metaphors involving the heart’ (svenaeus 2012: 78–79). equated with life, love, passion and the soul, it is often our hearts that are seen to define us as human, and alive (sharp 1995). organ scarcity is widely acknowledged as the dominant, and most persistent, problem faced in contemporary transplantation (jonsen 2012), and knowledge of the extent of organ scarcity serves to empha- sise the magnitude of ‘the gift’ for those who are in receipt of it. the social worth and symbolic weight of the heart is such that it magnifies, even further, what is given and received in the context of heart trans- plantation. as noted by douglas (1992: 162), visible gift exchanges are ‘readily subject to public scrutiny and judgments of fairness’. through their narratives, heart recipients revealed an acute awareness of this, and many clearly felt the need to establish their worthiness of receiv- ing a rare and precious heart (o’brien et al. 2014). some attempted to establish that failure of their (original) heart occurred despite maintain- ing a healthy lifestyle: that is, it was not the result of any wrongdoing on their part. they spoke of engaging in good health practices such as regular exercise, maintaining a healthy diet, and not smoking or con- suming excessive amounts of alcohol. they distanced themselves from blame through their accounts of unfortunate circumstances resulting in major heart damage, and in highlighting their blamelessness, attempted to demonstrate their deservingness of a heart transplant. age was also raised as an issue in relation to deservingness. two of the older men believed they had received the heart of a young person, and they both struggled with concerns that the donor family might discover the heart of their loved one had been given to an ‘old fart … instead of going to some young person that has got his life ahead of him’ (colin) www.ebook3000.com

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222 g. o’brien or, as jeffrey reported, that the heart had been ‘wasted on someone who’s had a life’ (o’brien et al. 2014). both sought to justify their receipt of a heart transplant (as opposed to someone young and, by virtue of their youth, more deserving). colin suggested that he was perhaps the only one who could have ‘accepted’ the heart at the particular time his heart transplant became available; and jeffrey co-opted the voice of his doctor who indicated that despite his age, jeffrey was ‘a perfect candidate’ for transplant. several years post-transplant neither man appeared entirely at ease with his receipt of ‘the gift’. there was a sense of guilt threaded throughout their narratives, and each of them had ensured that the donor family did not learn of his age (o’brien et al. 2014). gift-of-life understandings of transplantation appear to influence the experience of gratitude in this context. of all participants, heart recipients most often spoke of their transplant as the gift-of-life. cindy, for example, spoke of the family who donated the heart she received: ‘they’ve given me a gift, so i can now live my life’. likewise, cecelia reported: ‘[i]t certainly is a gift-of-life because without a donor heart i certainly would not have survived’. bob also invoked the gift trope when referring to his transplant: this [donated heart] is the gift. i got six years more and i was not given much time. if i didn’t get my transplant that year, i would have passed in [year]. i was so sick. so sick i couldn’t even walk up any incline. i was dying. having established their transplant as the ‘gift-of-life’, heart recipients most uniformly expressed gratitude in relation to it. even though they reported the negative aspects of their experience, their narratives were those most closely aligned with the idealised version of organ transplan- tation. the following extract from diana’s narrative exemplifies this: i have a life. i wouldn’t be here; i know i would be dead. i know that i’m very blessed to have a heart. ah, and each day’s a new day. you get up. you enjoy the day. i try to fit as much in as i can. … i’m very grateful for my heart. i’m grateful for everything. i’m grateful for [hospital]. ah, the institu- tion is wonderful. yeah. and for my family. yeah. christmas and birthdays and celebrations. … that’s what i’m grateful for. yes. the celebrations.

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9 gift-of-life? the psychosocial experiences … 223 gift rhetoric has the capacity to condition, and even prescribe, the experience of transplantation and recipients’ moral understanding of what has transpired in the event of their transplant (shaw 2012, 2015a). many heart recipients demonstrated the ‘good recipient’ response to their transplant, which entailed a post-transplant ‘construc- tion of care’ (sothern and dickinson 2011) including gratitude for the gift-of-life, responsible healthcare management (e.g. strict adherence to immunosuppressant regimes, healthy diet, and regular exercise) and attempts to help others. when i mentioned to diana (quoted above) that some people had spoken about feeling a sense of responsibility in relation to their heart, she responded: oh, you mean i feel the responsibility that i have to look after it? oh yes. yes, yeah. i feel that, ah, oh yes, i do look after it. i try to lose weight. um, i look after it. take my medication … i do exercise … i try to con- tribute back. like today [participating in the study], i wanted to help those coming after me. colin spoke of his attempt to set up a support group to help oth- ers: ‘i mean it’s a privilege to have it done. why not tell other people about it?’, and also his frustration that staff at the hospital did not help to promote this group: ‘we put a brochure up, but people didn’t avail themselves of it because it wasn’t pushed by the girls there … that, that would be the only failing i would put on the hospital’. john attempted to help others by becoming a pro-donation advocate: i can try to get people to appreciate what it is. but they do that just by seeing me and by seeing other transplant patients as well … i think they [donatelife] should show a little more of the people who have received this gift, um, and centre on just getting people on donation. getting them on the register. that’s the most important thing. heart recipients endorsed the understanding that transplantation is, indeed, the gift-of-life and acknowledged awareness of being judged in their attempts to establish deservingness of the gift-of-life. having established their worthiness, it could be that the social aspects of the www.ebook3000.com

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224 g. o’brien transplantation experience were relatively straightforward for them. based on the findings of my research, the experiences of heart recipi- ents most closely adhere to the gift-of-life experience prescribed by gift rhetoric. dissent: the experience of liver transplantation the context in which organ transplantation is experienced may differ in a number of ways; influenced not only by personal circumstances but also by the broader social milieu within which it occurs. healthism (i.e. the moralisation of health) has become a dominant ideology in contem- porary western societies, comprising a framework within which individ- uals are held to be responsible for their health status (crawford 2006). the choices we make regarding what we eat and drink, how much we exercise, and general health maintenance (e.g. regular pap smears, or colonoscopies) are associated with health outcomes, and those who expe- rience poor health or illness are seen to have failed to engage in respon- sible self-management. cheek (2008: 976) noted the intense focus on ‘health as an ideal’ and ‘ideal health’ that exists within healthism and the use of language that denotes transgression (e.g. sin, bad, weak) when one fails to live up to this ideal. she argued that health has become a civic duty; and good health is seen to be ‘a badge of honor by which we can claim to be responsible and worthy both as citizens and individuals’ (cheek 2008: 974). as galvin (2002: 110) points out, however, under- standing good health to be the consequence of making the ‘right’ choices slides easily into blaming individuals for ill health and can be ‘devastat- ing’ for the chronically ill, leading to guilt and self-recrimination. in the context of liver transplantation, the public appears particularly judgemental and willing to discriminate against those who are consid- ered to be responsible for their illness (neuberger et al. 1998). in sce- nario-based studies of preferences in the allocation of donated livers for transplant, most participants agreed that preference should be given to those with naturally occurring liver disease before those with alcoholic liver disease (ratcliffe 2000; ubel et al. 2001; wittenberg et al. 2003). these findings in specific relation to liver transplantation reflect more

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9 gift-of-life? the psychosocial experiences … 225 general principles in the allocation of scarce resources, in which people judged ‘irresponsible’ arouse less pity and sympathy, more disgust and distaste and are considered less deserving of scarce healthcare resources than those with uncontrollable and/or external causes of need for help (skitka and tetlock 1992). liver recipients are more susceptible to sus- picions of ‘bad’ (antisocial/unhealthy/unworthy) behaviour than recipi- ents of other organs, and such judgements of ‘undeservingness’ have significant consequences for their experience of transplantation. the male liver recipients (five of the six liver recipients) in my research demonstrated a resistance to health discourse and to worthi- ness narratives more generally. while the female liver recipient and prospective recipient had ‘justifiable’ reasons for their liver disease (i.e. both reported their liver failure was the result of a disease/infection they had contracted), and were consequently able to find a place for them- selves in the ‘deserving and grateful’ narrative, the male recipients did not attempt to stake a claim to being worthy of the gift. they openly acknowledged a pre-transplant lifestyle that incorporated practices not in keeping with social understandings of a healthy (i.e. moral) life. all described themselves, in various ways, as being ‘big drinkers’ and some also spoke of many years of drug use. they often reinforced the view that overuse of alcohol, and other drugs, was typical of people who needed liver transplants. despite reproducing this stereotype themselves in their discussions around liver transplantation, these liver recipients also appeared sensitive to the public’s judgement of them. doug, for example, reported: ‘with alcoholism, you know … um, there’s a big, there’s a lot of stuff, judgmental stuff goes on about that, you know … [the public ask] “why are you wasting organs on eeuuww?” [grimaces]’. he later stated: ‘[the public think] “you’re not perfect, you shouldn’t have that” … are, are you worthy of that gift?’ the liver recipients indicated their understanding that those with alcohol-related liver dis- ease are judged and found wanting, and the general public are sceptical about their worthiness of receiving a transplant. the gift-of-life metaphor emphasises the magnitude of the exchange that occurs in organ transfer and firmly establishes the transplant story as one that entails gratitude. although normatively expected in the context of transplantation, the moral imperative to be grateful was not www.ebook3000.com

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226 g. o’brien taken up by all liver recipients and gratitude was not a strong feature of their narratives. few spoke of gratitude in direct relation to their trans- planted liver, perhaps because of the context in which liver recipients receive their transplant. sensitised by the social stigma surrounding liver disease, the experience of transplantation for some liver recipients (i.e. receiving an ‘unearned gift’, one they do not deserve) might be strongly inflected by shame. exline (2012) questioned the understanding that kind acts will have uniformly positive effects, finding that some people on the receiving end of kindness perceive themselves to be diminished by the experience. exline et al. (2012) found that gratitude was more likely to be experi- enced in response to normative acts of kindness than non-normative (i.e. ‘amazing’) kindness. people who received ‘amazing’ kindness from others tended to perceive the kindness as being undeserved, which was in turn linked with reports of shame/weakness and mistrust. shame has been associated with intense anger, hostility and the blaming of others for one’s plight (tangney et al. 2007) and can lead to unfavour- able evaluations of the donor and the help received (fisher et al. 1982). the narratives of many of the male liver recipients indicated that, for them, transplantation was a highly self-threatening experience and this elicited defensive reactions that included some negative evaluations of their experience. attempts were made to discursively redefine the situa- tion, lessening the value of the help received. for example, when asked whether he thought of his donated liver as ‘the gift-of-life’, anthony responded: ‘i think i was already alive before. i’ve been given an exten- sion … yes, so i just see it, that i’ve been kind of let off the hook for a while’. he referred to the gift-of-life as ‘a good selling point. yeah, a marketing thing’, but ‘it doesn’t cross my mind to view [my liver] like that’. as noted previously, gift-of-life rhetoric serves to emphasise the mag- nitude of the donated organ. that is, it underscores the ‘amazing’ kind- ness of the donor, and ‘amazing’ nature of the gift given and received in transplantation. with their status as good, moral, citizens of society already challenged through the lens of healthism, the ‘amazing’ nature of the gift might serve to exacerbate liver recipients’ feelings of shame and inhibit the experience of gratitude in this context. in sharp contrast

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9 gift-of-life? the psychosocial experiences … 227 to heart recipients, many liver recipients in the study were forthright in their rejection of gift-of-life understandings of transplantation. many downplayed the magnitude of ‘the gift’, and a comment made by jack (when speaking of his transplant) reflected the general consensus of the male liver recipients: ‘i don’t think you can be over precious about it either. i mean, it’s not a miracle, it’s simply good medicine’. gift-of-freedom: dialysis and kidney transplantation kidneys differ from other organs for transplant in a number of ways that are consequential for the lived experience of transplantation (sharp 1995). while hearts and livers are life-saving organs, kidneys can be considered quality of life organs: treatments such as dialysis can replace the functioning of kidneys and those on dialysis can remain so for extended periods of time. as regards social worth, there exists the option for live kidney donation as well as cadaveric donation, so more kidneys are available for transplant and this results in a decrease in their social value (when compared with hearts, for example). organs also dif- fer widely in terms of their symbolic weight. while the heart represents life, love and goodness, svenaeus (2012: 72) asks ‘what, really, is a kid- ney symbolic of?’ an answer to this question does not spring readily to mind. the context of kidney transplantation is often less urgent than that of heart or liver transplantation; however, it would be ill-conceived to infer that this makes the experience of kidney transplantation somehow easier or without serious consequence for the individuals concerned. although dialysis liberates these individuals from the limits imposed on the body by end-stage renal failure, it can be anxiety provoking (i.e. remaining alive depends on the dialysis machine), and involves an investment of time and energy that can be exhausting (russ et al. 2007). for some, the treatment can be as burdensome as the disease itself (schulz et al. 2012). in my research, prospective kidney recipients spoke at length of the extent to which dialysis consumed their lives, in terms of both the actual time spent in treatment and the mental burden of needing www.ebook3000.com

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228 g. o’brien to plan all other activities to accommodate it. life for these participants was experienced as being dominated by restrictions and limitations: most notably in terms of time (‘taken’ from their lives for dialysis), diet (particularly fluid intake) and lifestyle (e.g. inability to partici- pate in some social activities; difficulties entailed in travelling) (see also bayhakki and hatthakit 2012; clarkson and robinson 2010; shaw 2015b). at four and a half years, alan (of all the prospective kidney recipi- ents) had been on dialysis for the longest length of time. he reported having to go into hospital three times every week, being ‘on the machine’ 5 hours each time, and always feeling sick afterwards. he con- tinued to work throughout this period however, stating this was only possible because his employers were ‘very lenient’ and allowed him to work around his dialysis schedule. while alan spoke of the many things he could no longer do because of dialysis and the difficulties he endured, there was no sign of self-pity in his narrative. it seemed that hope for a kidney (and a quality of life similar to that of his sis- ter, who had previously received a kidney transplant) gave meaning to dialysis, the sickness it caused and the restrictions it imposed on his life. as highlighted by billington et al. (2008) in their study of hope in the context of end-stage renal disease (esrd), hope functions to lessen the impact of esrd and its treatment, reducing the emotional burden. all prospective kidney recipients were on dialysis and reported (to varying degrees) their struggle with dialysis, as it represented the treat- ment for, and cause of, sickness. in keeping with the wider research in this field (e.g. clarkson and robinson, 2010; shaw 2015b), participants universally acknowledged transplantation as representing ‘freedom’ from dialysis. luke, for example, stated that transplantation is ‘the gift of freedom, more so than life. i mean, ah, dialysis is life … um, the gift of a kidney is more about freedom’. jacob expressed similar sentiments: ‘you are um, pretty well, you know, bonded to that machine, and ah, it’s, it’s your life and if you don’t have it, you die’. he stated that trans- plantation, to him, meant not ‘having to rely on [that machine]’ and returning to ‘the freedom [he] had before [he] started dialysis’. prospective kidney recipients indicated their belief that dialysis was keeping them alive. it might be anticipated, then, that their treatment

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9 gift-of-life? the psychosocial experiences … 229 would evoke much gratitude, and for some this was the case: they spoke of dialysis as a privilege, and were mindful of the many others, often unknown, who had acted in ways that benefitted them. focusing on dialysis as a benefit that in different circumstances they might not have received, they expressed much gratitude in relation to their access to dialysis, the effects of the treatment on their health, the healthcare pro- viders who delivered dialysis and those who supported them through it. these participants tended also to acknowledge, but not dwell on, the restrictions and impositions of dialysis. lisa, for example, reported a number of seriously debilitating conditions, and treatments for these, before being diagnosed with kidney failure. she then had a sad and unfortunate experience of transplantation; she received a kidney from her brother but ‘it died’ a short time later. although she spoke of the difficulties she experienced in dealing with the loss of her kidney trans- plant, lisa went on to say that in some ways she considered herself ‘fortunate because at least with a kidney transplant you can get a sec- ond go. heart transplants and so forth, you’re not necessarily as lucky’. unprompted, lisa spoke of some of the positive aspects of her trans- plant experience and there was a sense that she sought a silver lining in all that had occurred. when asked if there was anything in her life that she was thankful or grateful for, she responded without hesitation: ‘at the moment, i just say: “thank god i’m alive”’. lisa went on to outline a number of things for which she was grateful (e.g. her brother donating a kidney to her, being able to go on the waitlist for a second transplant, the ‘massive amount of support’ she received from friends) and made several comparisons with those who were not in similar circumstances. the comparisons lisa made with others she considered to be less for- tunate than herself represent downward counterfactuals, where focus is placed on how the situation could be worse (e.g. she could have been a heart recipient, and unable to ‘get a second go’ at transplant; or she could be as ill as some of the people she saw at work, who were una- ble to do the things she could do). this focus elicits an appreciation for life and what one has (i.e. tangible and intangible assets) that is typical of the grateful (wood et al. 2008). research has indicated that down- ward counterfactuals play a powerful role in the activation of grati- tude (teigen and jensen 2011), as gratitude, by virtue of its definition, www.ebook3000.com

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230 g. o’brien involves the receipt of a benefit that might not have come one’s way. in a study of kidney recipients’ quality of life, orr et al. (2007) found that participants made downward comparisons with their pre-transplant time on dialysis, which served to generate positive feelings of being ‘lucky’ and enabled coping with the difficulties of life post-transplant. one of the mechanisms undergirding this effect might be a sense of coherence, defined by lambert et al. (2009) as an understanding that life is manageable, meaningful and comprehensible. lambert and col- leagues found that gratitude is linked with increased sense of coherence, through positive reframing (i.e. benefit-finding or positive reinterpreta- tion). sense of coherence, in turn, predicts a number of positive out- comes, including enhanced coping with critical illness (fok et al. 2005). although some participants spoke of many things for which they were grateful, others did not mention gratitude at all. sonia, for exam- ple, reported the treatment she had received over a period of several years as her kidney disease progressed, and the dialysis equipment and supplies that had been provided so she could undertake dialysis at home. she had not mentioned thanks or gratitude at this point, and when asked whether there was anything in her life for which she was thankful or grateful, she replied (after a pause): ‘no, there is, there isn’t, no’. gift-of-life discourse suggests that a person should be primar- ily grateful for receipt of ‘the gift’ (an organ transplant), not necessar- ily the medical treatment that keeps him/her alive until a transplant is received. however, the moral imperative of gratitude suggests that it is experienced when a valued benefit has been received, and the ben- efit was given intentionally and at some cost or effort to the benefac- tor (mccullough and tsang 2004). it appears that for sonia (and some others in the study), the ‘prerequisites’ for gratitude had not been met. this may be due to their understanding of the treatment received. that is, it might be understood as an entitlement rather than a benefit. where there is a sense that one is entitled to something (health care, or education, in societies such as australia, for example), it might not be understood as a ‘benefit’ per se, and consequently gratitude might not be experienced in response to it. even though many of the prospective kidney recipients constructed dialysis as the gift-of-life, this understanding is not as clearly situated within the social discourse that

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9 gift-of-life? the psychosocial experiences … 231 constructs donated organs (rather than medical treatments) as ‘gifts’. a focus on what they have not received yet, a kidney, or on the more negative aspects of their treatment is not likely to lead to the cognitive processing (e.g. benefit-finding) that is associated with gratitude (wood et al. 2008). all of the prospective kidney recipients were aware of gift-of-life understandings of transplantation but discursively (re)defined trans- plantation as the gift-of-freedom. transplantation was thus relegated to a lesser role in their ongoing treatment for esrd. it meant freedom from the inflexible routines that dialysis entailed, freedom from the restrictions dialysis imposed on their lives and/or freedom from the discomforts/pain/sickness that some experienced as a consequence of dialysis. with respect to this redefined understanding of kidney trans- plantation, it could, thus, be viewed as a less valuable ‘gift’ than dialysis and less valuable relative to other (life-saving) organs. prospective kid- ney recipients’ understanding of transplantation as the gift-of-freedom supports the view that the particular organ being received informs the experience of transplantation and also that the gift-of-life understanding of transplantation cannot be uniformly applied. organ recipients and prospective recipients are not best served by the routine application of a generic, single and singular, model of transplantation that does not nec- essarily ‘fit’ with their experience. this may be particularly so in health- care settings where the application of a model that does not fit with the experience of those involved is likely to have the most pronounced influence. conclusion it is important that a purely biomedical approach is not adopted when attempting to understand health, illness and the effect of biotechnolo- gies on the individual and his/her life: failure to recognise and acknowl- edge the situatedness and contingencies of a person’s life can prove detrimental to medical efficacy and appropriate care. throughout my research, i found that not all participants were telling the story that one might expect: that is, ‘the gift-of-life story’, with morally expected www.ebook3000.com

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232 g. o’brien (appropriate) levels of gratitude. what i, instead, encountered were many different stories, all replete with the struggle of the ‘ordinariness of the day-to-day’ (kierans 2005: 343). as kierans (2005) suggests, these are complex stories, wrought by the experience of life-threaten- ing illness, biomedical intervention and outcomes. importantly, these are stories that reflect the unique circumstances of the individuals con- cerned and the unique meanings made of these experiences, rather than stories that represent the (mere) recounting of an illness trajectory. i grew to understand that not all organ recipients recognise transplan- tation as the gift-of-life. the move away from a generic model of ‘the’ transplantation experience provides a more nuanced understanding of transplantation, its influence on the lives of those who experience it and also that of gratitude (and other emotions) in this context. gift-of-life discourse marginalises the voices of those who are any- thing less than straightforwardly grateful for their transplant. these voices may be those of the most uncertain and vulnerable of transplant recipients. their silencing can be powerfully consequential for the ways in which they make meaning of their transplant experience and, ulti- mately, their ongoing physical and psychological health. the narra- tives of some participants were not marked by gratitude but, instead, by emotions such as shame and anger. these emotions appeared to be driven by some of the devastating effects of transplantation, such as the inability to work or find employment, the financial difficulties that ensued from this and the effects of these difficulties on the lives of recip- ients and their families. sanctioned ways of encountering and speaking about transplantation exist, and the voicing of aspects of transplantation that do not conform to gift-of-life discourse represents a social taboo. there is thus little leeway for the contingencies of recipients’ lives, and the emotions elicited by them, to be acknowledged and lived with. drawing on a range of studies concerned with the delimiting potential of gift-of-life discourse, shaw (2015a) has proposed that a flexible range of explanatory concepts replace the rigid gift-of-life conceptualisation of organ donation and transplantation that currently prevails. shaw’s expanded ‘conceptual toolkit’ includes ‘the unconditional gift, the gift relation, gift exchange, body project and body work’ (2015a: 952) and provides a broader social and moral milieu in which organ donors and

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9 gift-of-life? the psychosocial experiences … 233 recipients might site and make meaning of their transplant experience (see also zeiler 2014). the narratives of transplant recipients and prospective recipients are an important source of information about the transplant experience. there is wisdom inherent in patients’ illness stories, and access to this wisdom leads to a more complete understanding of the illness experi- ence. while the heart recipients in my research endorsed the under- standing of transplantation as the gift-of-life, many of the liver recipients and prospective kidney recipients did not. a generic (gift-of-life) model of transplantation is rigid and does not allow for the recognition, acknowledgement and deep understanding of the realities of transplanta- tion for those within the individual (i.e. heart, liver, kidney) groups. living in defiance of death, life for transplant recipients and prospec- tive recipients is forever caste in the shadow of this life-saving biotech- nology. new, dynamic, models of care are needed for chronic illness, particularly those involving biotechnologies where sense of self and being-in-the-world are compromised. these new models must pay heed to the situatedness and contingencies of lives, in order to best meet the needs of those requiring treatment. in reference to bioethical discourse and practice, walker (2009: 3) reminds us that: ‘societal conversations are not open circuits in which all have a chance to be heard under con- ditions of comparable respect and credibility’. we can learn much about illness, treatment and the consequences of both, from the ill themselves. in the realm of transplantation, the stories of transplant recipients and prospective recipients reveal much about the intersection of individual lives, biomedical technologies and cultural discourses. the transplant community and all those invested in understanding and caring for those with end-stage organ disease would be well served by listening to them. references bayhakki, b. & hatthakit, u. (2012). lived experiences of patients on hemo- dialysis: a meta-synthesis. nephrology nursing journal, 39, 295–304. billington, e., simpson, j., unwin, j., bray, d., & giles, d. (2008). does hope predict adjustment to end-stage renal failure and consequent dialysis? british journal of health psychology, 13, 683–699. www.ebook3000.com

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234 g. o’brien cheek, j. (2008). healthism: a new conservatism? qualitative health research, 18, 974–982. clarkson, k. a., & robinson, k. (2010). life on dialysis: a lived experience. nephrology nursing journal, 37, 29–35. crawford, r. (2006). health as a meaningful social practice. health, 10, 401–420. crowley-matoka, m. (2005). desperately seeking “normal”: the promise and perils of living with kidney transplantation. social science and medicine, 61, 821–831. douglas, m. (1992). risk and blame: essays in cultural theory. london: routledge. exline, j. j. (2012). humility and the ability to receive from others. journal of psychology and christianity, 31, 40–50. exline, j. j., lisan, a. m., & lisan, e. r. (2012). reflecting on acts of kind- ness toward the self: emotions, generosity, and the role of social norms. the journal of positive psychology, 7, 45–56. fisher, j. d., nadler, a., & whitcher-alagna, s. (1982). recipient reactions to aid. psychological bulletin, 91, 27–54. fok, s. k., chair, s. y., & lopez, v. (2005). sense of coherence, coping and quality of life following a critical illness. journal of advanced nursing, 49, 173–181. fox, r. c., & swazey, j. p. (2002). the courage to fail: a social view of organ transplants and dialysis. new brunswick, nj: transaction. galvin, r. (2002). disturbing notions of chronic illness and individual respon- sibility: towards a genealogy of morals. health, 6, 107–137. gill, p., & lowes, l. (2008). gift exchange and organ donation: donor and recipient experiences of live related kidney transplantation. international journal of nursing studies, 45, 1607–1617. gunnarson, m. (2012). concealed by the “gift of life”: the complexities of living with dialysis and kidney transplantation in stockholm and riga. in m. gunnarson & f. svenaeus (eds.). the body as gift, resource, and com- modity: exchanging organs, tissues, and cells in the 21st century. stockholm: södertörns högsköla. retrieved from http://lup.lub.lu.se/record/3801661. jonsen, a. r. (2012). the ethics of organ transplantation: a brief history. american medical association journal of ethics, 14, 264–268. kierans, c. (2005). narrating kidney disease: the significance of sensation and time in the employment of patient experience. culture, medicine and psychiatry, 29, 341–359.

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9 gift-of-life? the psychosocial experiences … 235 kierans, c. (2011). anthropology, organ transplantation and the immune sys- tem: resituating commodity and gift exchange. social science and medicine, 73, 1469–1476. lambert, n. m., graham, s. m., fincham, f. d., & stillman, t. f. (2009). a changed perspective: how gratitude can affect sense of coherence through positive reframing. journal of positive psychology, 4, 461–470. mauss, m. (1970). the gift (i. cunnison, trans.). london: cohen & west. mccullough, m. e., & tsang, j. (2004). parent of the virtues?: the prosocial contours of gratitude. in r. a. emmons & m. e. mccullough (eds.), the psychology of gratitude. new york, ny: oxford university press. neuberger, j., adams, d., macmaster, p., maidment, a., & speed, m. (1998). assessing priorities for allocation of donor liver grafts: survey of public and clinicians. british medical journal, 317, 172–175. o’brien, g. m., donaghue, n., walker, i., & wood, c. a. (2014). deservingness and gratitude in the context of heart transplantation. qualitative health research, 24, 1635–1647. orr, a., wilis, s., holmes, m., britton, p., & orr, d. (2007). living with a kidney transplant: a qualitative investigation of quality of life. journal of health psychology, 12, 653–662. pringle, j., drummond, j., mclafferty, e., & hendry, c. (2011). interpretative phenomenological analysis: a discussion and critique. nurse researcher, 18, 20–24. ratcliffe, j. (2000). public preferences for the allocation of donor liver grafts for transplantation. health economics, 9, 137–148. russ, a. j., shim, j. k., & kaufman, s. r. (2007). the value of “life at any cost”: talk about stopping kidney dialysis. social science and medicine, 64, 2236–2247. schulz, t., niesing, j., stewart, r. e., westerhuis, r., hagedoorn, m., ploeg, r. j., et al. (2012). the role of personal characteristics in the relationship between health and psychological distress among kidney transplant recipi- ents. social science and medicine, 75, 1547–1554. sharp, l. a. (1995). organ transplantation as a transformative experi- ence: anthropological insights into the restructuring of the self. medical anthropology quarterly, 9(3), 357–389. sharp, l. a. (2001). commodified kin: death, mourning, and compet- ing claims on the bodies of organ donors in the united states. american anthropologist, 103, 112–133. www.ebook3000.com

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236 g. o’brien shaw, r. (2012). thanking and reciprocating under the new zealand organ donation system. health, 16(3), 298–313. shaw, r. m. (2015a). expanding the conceptual toolkit of organ gifting. sociology of health and illness, 37, 952–966. shaw, r. m. (2015b). being-in-dialysis: the experience of the machine-body for home dialysis users. health, 19, 229–244. shaw, r., bell, l., & webb, r. (2012). ‘new zealanders’ perceptions of gift and giving back as participants of organ transfer procedures. kotuitui: new zealand journal of social sciences online, 7(1), 26–36. siminoff, l. a., & chillag, k. (1999). the fallacy of the “gift of life”. hastings center report, 29, 34–41. skitka, l. j., & tetlock, p. e. (1992). allocating scarce resources: a contin- gency model of distributive justice. journal of experimental social psychology, 28, 491–522. smith, j. a. (2011). evaluating the contribution of interpretative phenomeno- logical analysis. health psychology review, 5, 9–27. sothern, m., & dickinson, j. (2011). repaying the gift of life: self-help, organ transfer and the debt of care. social and cultural geography, 12, 889–903. sque, m., & payne, s. a. (1994). gift exchange theory: a critique in relation to organ transplantation. journal of advanced nursing, 19, 45–51. svenaeus, f. (2012). the phenomenology of organ transplantation: how does the malfunction and change of organs have effects on personal identity. in m. gunnarson & f. svenaeus (eds.). the body as gift, resource, and com- modity: exchanging organs, tissues, and cells in the 21st century. stockholm: södertörns högsköla. retrieved from http://lup.lub.lu.se/record/3801661. tangney, j. p., stuewig, j., & mashek, d. j. (2007). moral emotions and moral behavior. annual review of psychology, 58, 345–372. teigen, k. c., & jensen, t. k. (2011). unlucky victims or lucky survivors? spontaneous counterfactual thinking by families exposed to the tsunami disaster. european psychologist, 16, 48–57. ubel, p. a., jepson, c., baron, j., mohr, t., mcmorrow, s., & asch, d. a. (2001). allocation of transplantable organs: do people want to punish patients for causing their illness? liver transplantation, 7, 600–607. varela, f. j. (2001). intimate distances: fragments for a phenomenology of organ transplantation. journal of consciousness studies, 8, 259–271. retrieved http://www.ingentaconnect.com/content/imp/jcs/2001/00000008/ from f0030005/1217.

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9 gift-of-life? the psychosocial experiences … 237 walker, m. u. (2009). introduction: groningen naturalism in bioethics. in h. lindemann, m. verkerk, & m. u. walker (eds.), naturalized bioeth- ics: toward responsible knowing and practice. new york, ny: cambridge university press. wittenberg, e., goldie, s. j., fischhoff, b., & graham, j. d. (2003). rationing decisions and individual responsibility for illness: are all lives equal? medical decision making, 23, 194–211. wood, a. m., maltby, j., stewart, n., & joseph, s. (2008). conceptualizing gratitude and appreciation as a unitary personality trait. personality and individual differences, 44, 621–632. zeiler, k. (2014). neither property right nor heroic gift, neither sacrifice nor aporia: the benefit of the theoretical lens of sharing in donation ethics. medicine, health care and philosophy, 17(2), 171–181. author biography geraldine o’brien recently completed her ph.d. in the school of psychology and exercise science at murdoch university, western australia. geraldine’s research interest is sited within social psychology, with a particular focus on health psychology. her work on heart transplantation has recently been pub- lished in qualitative health research. www.ebook3000.com

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10 organ donation practices and end-of-life care: unusual bedfellows or comfortable companions? maureen coombs and martin woods introduction death was once an event managed at home with little medical interven- tion (howarth 2007). by the last few decades of the twentieth century, in western societies, death became something managed in hospitals and actively overseen by medical professionals (flory et al. 2004). as a result, there has been considerable discussion about how to identify the point at which end of life begins and how best to care for people at the end of life. such debates are particularly thought-provoking in intensive care, where end-of-life discussions can seem at odds with the clinical setting’s stated function: to admit critically ill patients and use advanced medical interventions to achieve cure and recovery. while many people admitted to intensive care survive their critical illness (brinkman et al. 2013), there are those for whom modern health m. coombs (*) · m. woods victoria university of wellington, wellington, new zealand e-mail: maureen.coombs@vuw.ac.nz © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_10 239

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240 m. coombs and m. woods care is unable to bring about recovery. death and dying is therefore an integral part of intensive care practice (truog et al. 2008) and the skills of caring for the dying patient and supporting family/whānau1 are equally as important as the skills required to manage the intensive care technology (bion and coombs 2015). the ability to communicate in a skilled and compassionate manner is even more important, given the sensitivity of the end-of-life decisions that need to be made. this chapter aims to explore the key ethical and clinical challenges that surround end-of-life care and organ donation by drawing on the experience of three donor families in new zealand. each of these cases illuminates a specific issue within organ donation and the ways in which it relates to end-of-life care. as each of the cases involves brain death, donation after cardiac death will not be explored in this chapter. each narrative in this chapter has been generously provided by the family/ whānau and can be read in full on the new zealand organ donation website (http://www.donor.co.nz/). their accounts remind us of the immense personal tragedy that lies behind any writing on organ dona- tion and end-of-life care. end of life and donation matters in intensive care one in five patients admitted to intensive care will not live to be dis- charged. for most of these patients, death will result from a planned treatment withdrawal (wunch et al. 2005). the process of removing life-sustaining therapies occurs once consensus has been reached with all clinical staff and family/whānau that it is not in the patient’s best inter- ests to continue treatment. at this point, a shift from curative to pal- liative measures occurs, and end-of-life care is instituted. life-sustaining treatments are withdrawn, and pain-relieving and sedative medications are administered as required. cardio-respiratory activity eventually ceases, and the patient’s death is certified. however, there is another circumstance that leads to a patient’s death being certified in intensive care. eleven percent of all deaths in this www.ebook3000.com

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10 organ donation practices and end-of-life care … 241 setting result from brain death (senouci 2004). this occurs following a catastrophic cerebral event or injury that leads to the permanent cessa- tion of brain function. brain death is indicated by coma, absence of key brain stem reflexes, and lack of respiratory effort. once brain death has been confirmed, the possibility of the patient becoming an organ donor is raised with the family/whānau. if there is an agreement in favour of organ donation, the goals of care become oriented towards maintaining healthy organ functioning and identifying compatibility with potential organ recipients. this leads to the brain dead organ donor continuing intensive care treatments, and receiving increased screening, monitor- ing, and interventions to support the body systems until the organs are removed (mckeown et al. 2012). organ donation resulting from brain death can only occur after the person has been declared dead: the so-called dead donor rule. however, debates continue about whether death of the entire brain or only spe- cific parts of the brain determines non-circulatory brain death. as a result, there are different international definitions in use. in aotearoa/ new zealand, australia and the usa, brain death is defined as cell death within the brain stem and cerebral hemispheres. in the uk, the term ‘brain stem death’ is used to describe a state where death of the brain stem has occurred even though there may be blood flow to the cerebral hemispheres. determining brain death is a complex process that requires a series of tests to ensure a correct diagnosis is made. this is particularly important given that brain death is distinct from other conditions, for example a persistent vegetative state where some brain activity remains. to ensure clarity and confidence in decisions made in this area, many countries have professional guidelines and legal standards in place to guide donor practices (wijdicks 2002). within these, there is broad agreement on the presence of irreversible coma, absent motor response, and absent brain stem reflexes to determine non-circulatory death. australasian guidance (australian and new zealand intensive care society (anzics) 2013) recommends that brain death testing is undertaken independently by two medical practitioners with specialist experience and qualifications. to make a diagnosis of brain death, two

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242 m. coombs and m. woods sets of tests are performed separately using the same procedures and assessment with a clear set of preconditions and exclusion criteria. the two tests are usually undertaken with a gap of several hours, to give fam- ilies time to assimilate and understand the gravity of events. if both sets of tests determine that brain death has occurred, the time of death is recorded as the time the second set of tests are completed. deceased person organ donation is important, as the number of living organ donations internationally remains small and, in some countries, continues to be associated with controversies such as organ trafficking (international summit on transplant tourism and organ trafficking 2008) and poor practice (gardiner et al. 2012). in aotearoa/ new zealand, the number of deceased donors per million popula- tion (pmp) was reported as 8.1 in 2013. when compared to reported activity figures in australia of 16.9 pmp and spain of 35.1 pmp (international registry in organ donation and transplantation 2014), our deceased person organ donation rates are low. in 2014, the fami- lies of 46 deceased patients from aotearoa/new zealand donated organs for transplantation (organ donation new zealand 2014). with a mean age of 45.6 years (median 49.7 years) these were mainly younger people who sustained catastrophic primary brain injuries including intracranial haemorrhage (n = 15, 32.6%) and non-road traffic accident traumatic brain injuries (n = 10, 21.7%). given the growing need on both sides of the tasman for organs to be transplanted into people with end-stage organ failure, it is unsurprising that local hospital-based and national- level policy initiatives have been developed to increase donation rates through earlier identification of potential donors (donatelife 2008; organ donation new zealand 2014). while end-of-life care and organ donation practices in intensive care have much in common (in particular, the need for honest, clear com- munication with families) there are also significant areas of difference (such as the focus on palliative measures versus organ support measures, and the reduction of interventions versus increased use of interven- tions), which need to be taken into account in any discussion of inten- sive care practice. www.ebook3000.com

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10 organ donation practices and end-of-life care … 243 the ethics of organ donation although the history of organ donation now spans several decades, it is still regarded as a developing science. even though it is now more than 60 years since the first kidney transplant and 50 years since the first heart transplant, it is only a mere 25 years ago that the first lung transplantation operation was performed (watson and dark 2012). the topic of bioethics itself shares this relatively short history, with many of its substantial developments occurring over the past half century. given the continuing developments in organ transplantation and bioethics, the moral aspects of organ donation and the respective ethical responses continue to be actively debated (wilkinson and wilkinson 2015). given this continued evolution, what sort of ethical approach is suit- able for all ongoing debates? traditional bioethical approaches have largely depended on the application of a moral framework of major bioethical principles, such as autonomy, beneficence, non-maleficence, and justice (beauchamp and childress 2013). these principles encap- sulate what is frequently regarded as a justice view of morality, various aspects of which are prevalent in deontological ethics (e.g. concerned with moral choices of the sentient, reasoning individual), in utilitarian ethics (the pursuit of social happiness through egalitarian means) and within libertarian ethics (where universal moral rules are translated into individually focused social rights and responsibilities). in the case of organ transplantation, these formulaic approaches often draw from this ‘justice view’ of morality, in particular the concept of distributive justice (persad et al. 2009) where the moral ideal is that of a fair and just soci- ety in which inequalities in outcome are overcome. that this is patently not the case (e.g. organs are frequently bought and sold, the issue of ‘transplant tourism’, poor people do not readily benefit) is therefore a moot point. indeed, there are numerous examples in western democra- cies where people in lower social strata, and within social systems such as health care, are far less likely to receive an organ transplantation than those who enjoy a greater degree of social capital (simmerling 2007).

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244 m. coombs and m. woods traditional moral approaches are increasingly found to be at odds with particular social and cultural contexts, especially in the wider social aspects of debates concerning organ transplantation and donation. the promotion of universal moral principles and individual choice may not take into account the bearing that socio-cultural circumstances, and complex relational arrangements have on moral decision-making (woods 2014). furthermore, the preoccupation with a justice-based ethics that assumes universally applicable moral principles is impractical and fails to appreciate the complexity of social realities in the context of health care and medicine. consequently, present-day debates about the ethics of organ donation need to reflect a wider range of bioethical approaches, and the inclusion of social (or socio-cultural) ethics in this chapter is used to draw attention to situations that require an alternative ethical analysis. two of the most significant bioethical issues associated with organ donation concern the processes by which organs are donated and the shortage of suitable organs for transplantation. most transplantable organs are extracted from deceased persons with prior consent, but it is this type of consent that lies at the heart of many bioethical issues in organ donation. it has been argued that, given the scarcity of organs for transplantation, modern medical responses and their dependence on the notion of the ‘altruistic society’ is failing. this has led to concerns about whether fairness, justice and social responsibility are applied when it comes to the distribution of organs to those most in need. organ donation cases with commentary in the following section, abbreviated excerpts from three family nar- ratives about organ donation from deceased organ donors within aotearoa/new zealand have been used to explore a variety of different, yet connected, clinical practice challenges, with their associated ethical arguments and resolutions. the cases are quoted verbatim from the new zealand organ donation website. www.ebook3000.com

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10 organ donation practices and end-of-life care … 245 case 1: susan’s story amy tells us about her mother susan jane milne, who was an organ donor. amy was 20 years old when her mother, a physically fit 44-year- old, collapsed and needed resuscitation. in her story, amy tells of the shock following her father’s phone call regarding the collapse, and of the horrendous, long journey to the hospital. in the hospital, her mother was in intensive care on a ventilator. this is her story: i remember going into see her and thinking, “she looks fine, there’s noth- ing wrong with her. why have they got all those machines connected to her? it doesn’t make sense.” i told my sister that she must be fine because when i touched her foot it twitched. i asked for proof of the damage and the doctors showed us the x-ray scans of mum’s brain and explained what had happened. it was obvious that the damage was significant. the doc- tors said their tests had also confirmed it was irreversible and that mum was brain dead. it was unbelievable. how could life go so quickly from one minute being wonderful to absolutely devastating and to never be quite the same again? i knew people had car accidents, got cancer, or they got sick and died in tragic circumstances but why my family? later that day we were approached by the icu (intensive care unit) team about turning off the ventilator and donating mum’s organs. “how could they ask us now? it’s so soon. if we say yes this means that she’s definitely dead and will never wake up.” it was inconceivable thinking that if we gave the go ahead it would be the last time i would be able to touch my mother’s warm face, or see her chest rise and fall – even if it was a machine making it work. my aunties, sister, cousin and i chose to dress mum and prepare her for her coffin ourselves. some people think that it’s an unusual thing to do. i admit it wasn’t easy seeing the incision that ran from between her breasts to her belly button, but also very empowering as it was like looking at a battle scar of a new generation of warriors. it was also one of the last dig- nities we could give mum and overall it was a very rewarding and helpful experience dealing with and accepting everything that had happened. [post note: susan’s lungs, liver and kidneys were donated]

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246 m. coombs and m. woods case 1: clinical practice commentary susan’s story raises issues about the nature of brain death and the pro- cess of organ donation in this context, highlighting two key issues that will be explored in more depth. the first of these is that a person who is brain dead may look ‘healthy’—their skin may have a normal colour, their chest appears to rise and fall with breathing, and they may feel warm to the touch. second, after brain death has been certified, patients who are organ donors are taken from the intensive care unit into the operating theatre for surgery. our understanding of what death looks like has historically been informed by circulatory death; that is, the cessation of cardiac and res- piratory functions. circulatory death is associated with absent palpable pulses, absent heart sounds, absent breath sounds, and the absence of respiratory effort or chest wall motion (shemie et al. 2014). this type of death results in the person looking pale and feeling cold to the touch. susan’s story makes apparent how different brain death is to circulatory death in these respects. one of the challenges for families in intensive care is that patients who are brain dead may not look physically any different to how fami- lies last saw them. this is due to the effect of the intensive care inter- ventions these patients require, and the mechanism of brain death itself. due to the loss of brain function and spontaneous breathing in those who are brain dead, mechanical ventilation is required. oxygenating the person maintains their warmth and colour, giving the impression that the person is alive and breathing. a further challenge for families is that brain death often results from non-traumatic primary brain injuries, cerebrovascular accidents, cerebral bleeds, and anoxic/hypoxic2 brain damage (escudaro et al. 2015). these patients may therefore have no obvious external injury or trauma marks and, again, appear ‘normal’ to their families. on being informed that the patient is brain dead, families (and sometimes staff) can become anxious when noting movement in the patient’s limbs, as in susan’s story. while there is no cerebral activity following brain death, there may still be spinal reflex activity, passing www.ebook3000.com

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10 organ donation practices and end-of-life care … 247 from sensory peripheral nerve receptors to the spinal column and back, to a peripheral muscle group which causes these movements. the lack of visual cues normally associated with circulatory death is clearly and understandably challenging for families (long et al. 2008). as outlined in susan’s story, the use of alternative cues, including the results of med- ical tests such as x-ray computed tomography (ct) scans, or witnessing brain stem testing, can be helpful for families to understand the extent of the damage and therefore the severity of the situation. after brain death has been confirmed with families, decisions about organ donation then take place. if families consent, organ donation coordinators conduct serologic testing and tissue typing to ensure best match with potential recipients. organs are vulnerable to ischae- mic injury,3 and to minimise this damage they are removed from the brain dead donor in theatre (mckeown et al. 2012). given that organs including the heart, kidneys, liver, lungs, and pancreas can be donated, donation operations can be lengthy (3–8 h) and may involve up to five surgical teams, although two surgical teams are more frequently used in new zealand. in cases where multiple organs are donated, a substantial incision is made down the patient’s central chest and abdomen (extended laparotomy and sternotomy) as in susan’s story. neuromuscular blocking agents may be given in theatre to prevent spinal reflex movements and minimise sympathetic nervous system overstimulation during surgery. once the organs have been removed, mechanical ventilation is discontinued and the incision is closed. many families find it challenging to see the body of their loved one leave intensive care, receiving full treatments, and know that the next time they see the body, as in susan’s story, will be when it is being prepared for funeral. case 1: bioethical commentary this case is indeed a tragic one, highlighting as it does the considera- ble differences between medical or clinical interpretations of death and dying, and the interpretations of the family who ‘look on’ or ‘bear wit- ness’. how might this apparent gulf between the medical interpretation

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248 m. coombs and m. woods of death and the appearance of life be addressed? when considering death in its various forms, discussions are often focused on body organs and vital signs, with the capacity for the normal functions as a human being stripped back to basic physiological mechanisms that are artifi- cially maintained, and no more (bernat et al. 2010). however, what is less commonly understood and accepted are the cir- cumstances surrounding the decision about time of death, and there- fore the point at which life support is withdrawn. here the differences between what is clinically the case (from the doctor’s perspective) and what seems to be the case (from the family’s perspective) are brought into sharp contrast. it is in such circumstances that the degree to which fully autonomous consent has been given by the next of kin for with- drawal of the medical treatment becomes of paramount ethical impor- tance. from the medical perspective, the patient has already died (lazar et al. 2001), but the family’s perception of signs of basic physiological life (e.g. being warm to touch and movement) may lead them to believe that the patient is still alive. it is of crucial importance that the family be given information to make informed decisions at this time, and to be able to give their consent for organ donation. this information needs to be carefully considered, delivered with compassion for the family’s enor- mous distress, and provided with an understanding that consent may not be forthcoming. thus, the bioethical quandary that affects both clinicians and fam- ily alike is the emotional need to cling to signs of life, while being asked to make an objective decision to end them. where the views of the deceased are known, this can help the decision-making process. however, such decisions may be much less clear when there is no prior understanding, or when the family perceives their loved one to still be alive, regardless of medical advice. in the end, amy’s choice was a reflec- tion of her mother’s autonomous desire to be of service to humankind. case 2: tesh’s story letitia (tesh) was 18 years old when she developed a cough and sore throat. after visiting a doctor, she suddenly deteriorated at home, with www.ebook3000.com

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10 organ donation practices and end-of-life care … 249 vomiting and a severe headache. at 04:00 a.m. in the morning she was taken into hospital, where doctors tested her for suspected meningi- tis. tesh gallagher’s parents, mark and lisa, tell the story of how tesh became an organ donor: the doctor took us to a side room and said that tesh did have meningitis after all and the disease had taken over her body so rapidly that barely any symptoms were detectable. he also said that the meningitis had caused fatal brain damage. it was only a few hours from the time our daughter arrived at hospital until we were told there she was brain dead and there was nothing they could do to save our girl. it all happened so fast. the doctors then apologized and said they needed to ask us a question. they then asked us if we would consider donating our daughter’s organs. we didn’t hesitate at all. our daughter tesh was a very giving person and was always willing to help others. the team from organ donation new zealand (odnz) was coming from auckland to retrieve tesh’s organs but unfortunately auckland air- port was fog bound. we had to keep tesh on the ventilator to preserve as many of her organs as possible. it wasn’t until the next day, before the retrieval team arrived, that they advised us that due to the length of time that she had been on the ventilator that her lungs could not be retrieved. they could however retrieve her eyes, heart, kidneys and liver. this operation was going to take five hours, so we decided to go away and get freshened up. after two hours, we received a phone call from the donor co-ordinator to tell us that unfortunately tesh’s heart was not via- ble. this just told us that her heart belonged to us. [post note: tesh’s heart valves were also donated] case 2: clinical practice commentary in tesh’s story, we learn more about the processes used to convey infor- mation about brain death and organ donation to families, and also gain greater insight into the organisation of organ donation. both these areas are unique to brain death as opposed to circulatory death and, as such, inform how end-of-life care is delivered. in tesh’s story, the key aspects

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250 m. coombs and m. woods of organ donor management that will be explored are the manner in which discussions are held with families, and the logistic challenges of retrieving donor organs. families of dying and deceased patients in intensive care regularly talk with doctors during family meetings held in the intensive care unit (truog et al. 2008). when well conducted, these are associated with increased family satisfaction with care and greater confidence in hos- pital staff (scheunemann et al. 2011). any information given to fami- lies, such as patient treatment plans and test results, needs to be honest, considerate, consistent, and delivered in a way that is understandable to families. this is particularly important in situations where the prog- nosis is poor (cook and rocker 2014). for the family of the patient who is brain dead, there are additional challenges: not only will they be informed of the death of their family member, they will then be approached to consider organ donation. in tesh’s story, we read how doctors spoke with the family confirming her brain death, and only after this did they discuss the possibility of organ donation. this is often termed the ‘decoupling process’ (siminoff et al. 2002). while it is difficult to appreciate the depth of distress felt by families at this time, we know that one-third of families who refuse organ donation, and one in ten families who consent to organ dona- tion, later come to regret their decision (degroot et al. 2012). holding organ donation discussions with families is also stressful for the clini- cians who increasingly work with donation coordinators to bring spe- cialist organ donation knowledge into such conversations (marks et al. 2006). this is corroborated by recent australian research (mullins et al. 2012) where most of the intensive care consultants surveyed were trained to talk with families about organ donation but expressed a pref- erence to work with donor coordinators. there are many factors that influence families’ decisions about organ donation. tesh’s parents did not hesitate in giving their consent for her organs to be donated, based on their knowledge of who tesh was in life and what was important to her. we know that such insight and under- standing about the deceased strongly influences family members’ deci- sions to donate (siminoff and lawrence 2002). however, views held by www.ebook3000.com

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10 organ donation practices and end-of-life care … 251 doctors about organ donation can also affect donation rates. when doc- tors hold more ambivalent views towards organ donation, consent is less likely to be gained from family members (sanner 2007). this highlights the importance of educating hospital staff about organ donation pro- cesses and how to talk with families about donation. depending on the outcome of family discussions about organ dona- tions, deceased patients will either go forward with organ donation, or, if consent is not given, treatments will be withdrawn. for brain dead patients progressing to organ donation, this raises another challenging concept. although the patient has been declared brain dead, the body must now be kept artificially alive until organ retrieval can be organised. this requires a substantial shift in thinking for donor families. strategies used by staff to help families understand that the patient is dead include language switch—from caring for ‘a patient’ to caring for ‘a body’—and instead of talking to the patient during care, staff are more likely to talk about the person in the past tense (forsberg et al. 2014). while the physiological management of the body is optimised prior to organ retrieval, other practical arrangements also need to be made. as referenced earlier, specialist teams are required in the operating theatre for the organs to be retrieved. in some countries, such as new zealand, these teams may be based in other hospitals. we read in tesh’s story of the delays to organ donation, as retrieval teams were unable to travel due to poor weather conditions. such logistical challenges introduce an element of the unpredictable, and means that families may be wait- ing with the deceased until full theatre teams are available. the impact of this on families is unclear: while some families experience this extra time as helpful (berntzen and bjørk 2014), for others it creates an addi- tional burden when they are already grieving (kesselring et al. 2007). what is clear is that the trajectory of care for brain dead patients is very different to that surrounding circulatory death. where the sequelae of brain death and organ donation can take place over hours to days, the events of end-of-life care resulting in circulatory death is much more rapid and usually takes place over the course of hours or minutes (wunsch et al. 2005). this places different demands on families and staff, with wider implications for the healthcare system.

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252 m. coombs and m. woods case 2: bioethical commentary this story highlights how the welfare of the individual intersects with the allocation of scarce resources during end of life and donation, and whether beneficence and the allocation of scarce resources are competi- tive values. tesh’s story is also one of huge tragic proportions: not only did mark and lisa lose their daughter in a very short space of time (“it all happened so fast”), the decision about organ donation is an addi- tional burden at a time of enormous grief and emotional turmoil. in circumstances where death is sudden and unexpected, it is unclear how next-of-kin decision-makers can be considered in an emotionally stable and reasoned state of mind, even if, as in tesh’s case, family mem- bers are willing to assist with the greater social good (hazlett 2016). as tesh’s parents noted: “we didn’t hesitate at all. our daughter tesh was a very giving person and was always willing to help others.” nevertheless, it should be noted that family can regard such requests as insensitive and uncaring, and as such there is a danger in promoting a rational, rea- soned, and utilitarian position at the expense of alternatives. in circumstances surrounding organ donation from a brain dead organ donor, it is important to assess the donor’s physiological state and maintain organ health before organ retrieval, in order to minimise the ‘inefficient’ use of scarce resources. this was apparent in tesh’s story due to the delays in retrieval. however, artificially controlling bodily func- tions after brain death has been confirmed may be seen by some as a challenge to the family and the deceased’s welfare. this therapy on the part of the intensive care unit staff not only has significant resource implications but substantial ethical ones as well. procuring organs from a deceased person can disrupt (or in this case even interrupt) ‘both the act of dying and the activity of accepting the death of those we love’ (cohen 2006). there must be room to employ a caring, relational ethic that rec- ognises the need for great compassion and care of both the dying per- son and their family. such an approach need not be in opposition to alternative ethical approaches, but must serve as a necessary adjunct to both the standard framework of principles employed by clinicians, and www.ebook3000.com

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10 organ donation practices and end-of-life care … 253 a relational and caring ethic (woods 2012). thus, by adjusting one’s moral gaze to the particulars of a given organ donor situation, it is pos- sible to balance the welfare of the individual and their family and the allocation of scarce resources. case 3: clifford’s story the final story in this chapter is from a māori donor family and speaks to the cultural values, beliefs, and challenges in aotearoa/new zealand. clifford tuhi thompson always wanted to help others, and it was for this reason that his mother victoria agreed to organ dona- tion after clifford, aged 36, tragically sustained a non-survivable brain injury following a bicycle accident. he was taken to hospital where he was ventilated and admitted to the intensive care unit. this is victoria’s story: the intensivist4 came in. when he asked if we would consider organ donation, there was no doubt in my mind. it would be terrible if his per- fectly good organs were not used to help the lives of other people. we discussed organ donation as a family and it was agreed. [afterwards] we had clifford at home (the marae) for one night and the wharenui (meeting house) was full of people telling stories about him. everyone was laughing. an older woman stood up and said “i think we should give clifford a standing ovation because of the gift of organs he has given to help others.” i know he would have been so pleased when they gave him a standing ovation. victoria says that in this poignant action, there was a lessening of the reservations surrounding organ donation. there wasn’t the aversion in the room as there sometimes can be in maori culture. and this is why victoria wants to tell her story - she wants to help raise awareness of organ donation, particularly within her own culture. “it is about promot- ing it to our people.” [post note: clifford’s heart and liver were donated]

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254 m. coombs and m. woods case 3: clinical practice commentary in the final part of this chapter, we move beyond events in hospital and explore wider cultural influences that impact decision-making about organ donation. in this section, we offer a brief (non-comprehensive) perspective on māori views about death, organ donation, and trans- plantation. in clifford’s story, we will explore how culturally held views about health, the body, and death influences attitudes towards organ donation. decisions made at end of life, and social customs and practices about what is appropriate at this time, are informed by culturally held val- ues and beliefs. such philosophies influence health care in many ways, including the manner in which technology is used at end of life, the moment at which death is recognised, and the body is perceived after death. with 15.5% of the estimated 4.6 million people in new zealand identifying as māori (statistics new zealand 2015) and with rates of organ donation proportionately lower for the māori population com- pared with non-māori populations (grace et al. 2014; shaw and webb 2015), it is important to understand what factors may impact end-of- life care and decision-making about organ donation among māori. in traditional māori culture, care given to those who are dying and deceased is informed by an understanding of what is sacred (tapu). whether death is of a circulatory or non-circulatory nature, the same rites and practices are afforded. the person who has died, and whose spirit has begun the journey to the resting place of their ancestors, is considered tapu. death and dying may be associated with prayer (kara- kia) and song commemorative of life’s important events (waiata). to respect the sacred at this time, food or drink is not usually permitted into a room where the deceased lies, and a bowl of water may be placed outside the room for the whānau to sprinkle themselves with prior to entering and upon exiting the room. such acts keep the worlds of liv- ing and the dead symbolically separate. the deceased’s body (tūpāpaku) is handled respectfully and, if the death has occurred in hospital, the deceased’s body will be removed to the mortuary, leaving the ward area feet first. it will be taken along a predetermined route, using designated www.ebook3000.com

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10 organ donation practices and end-of-life care … 255 lifts to avoid public areas. once the tūpāpaku has been removed from the room, further karakia will be said before the room is cleaned (waitematā district health board 2003). the deceased is usually pre- pared by an undertaker, often with the whanau present, before proceed- ing to the marae (nikora et al. 2012). here, the rituals and ceremonies associated with death continue to send the spirit on. as in clifford’s story, in the wharenui there is often whaikōrero (oratory), whakapapa (recitation of genealogy) and poroporoaki (speeches of farewell) before internment. while such end-of-life customs are often upheld in māori culture, the concept of organ donation does not always sit with so easily with traditional māori principles, as clifford’s mother states. although māori beliefs are diverse, a central part of maori world view is that the body comprises of wairua (spirit) and mauri (lifeforce) with every part of the body endowed with hau (vital spirit). therefore, the donation of an organ to another person is an act that bestows part of the self (wairua) to another (mauss 1990). in māori culture, the body also holds an existential interpretation (webb and shaw 2011) and links past and future generations (whaka- papa). in traditional māori practices, it is usual for the body to be bur- ied whole in order to return the tūpāpaku to papatūānuku (mother earth) and continue the ancestral line. removal of any body part is seen to leave the body exposed and defenceless, violating tapu. it may that the impact of this could be minimised by holding a formal cere- mony (pōwhiri) at the bedside to farewell the organs prior to removal (ngahooro 2010). such actions, together with recognition of and dis- cussion about māori people like clifford, whose organs have been donated, can help promote understanding of organ donation. as put by clifford’s mother, ‘it can help lessening of the reservations … and aver- sions’. case 3: bioethical commentary once more, as in the other two previous cases in this chapter, we see an example of the underpinning beneficence and goodwill of everyday

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256 m. coombs and m. woods individuals who ‘always want[ed] to help others’ even after death. it may be argued that this willingness to contribute to the public good spans all cultures, although clearly there are considerable social, cultural, and religious factors that influence decisions about organ donation (cooper and kierans 2016). however, organ donation and the receiving of organ transplants is not a cultural norm in every society, as evidenced by the reluctance and unease among asian and muslim peoples (vathsala 2004). although it is less common to donate body parts after death among māori (mauri ora associates n.d.), clifford’s case demonstrates that it inappropriate to assume a blanket refusal (or acceptance) from any given socio-cultural group towards a particular ethical position. indeed, the particulars in clifford’s case appear to indicate a growing acceptance of organ donation within some māori communities. as rates of end- organ failure continue to rise dramatically in such populations, organ donation and transplantation may become more acceptable (mauri ora associates n.d.). nevertheless, cultural sensitivities are not to be overrid- den, and the beliefs and value systems of members of any social group must be given full ethical consideration. all of this brings to mind a particular ethical model expressed across all three cases: the need for a greater appreciation and application of a more ‘socially orientated ethic’ (woods 2010: 722). this approach advocates the importance of three major ethical principles necessary in the decision-making process to enable a socio-cultural ethics perspec- tive to flourish. the principles are the promotion of social justice and empowerment, a greater recognition of both individual and collective cultural autonomy and identity, and the everyday pursuance of trust and respect within healthcare and societal contexts between providers and recipients. as such, this ethical approach signifies an alternative and complimentary ethical perspective to those approaches more tradition- ally used (e.g. beauchamp and childress 2013). however, clifford’s whānau had little difficulty in feeling empowered to exercise their autonomous right as a collective to donate organs at the time of clifford’s death (‘we discussed organ donation as a family … there was no doubt in my mind’). in doing so, as in the previous cases, the common driving force behind the decision was to do good (‘it would be www.ebook3000.com

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10 organ donation practices and end-of-life care … 257 terrible if his perfectly good organs were not used to help the lives of other people’) and at the same time to seek further acceptance among the wider whānau and iwi, which was the case when, at the tangi,5 the whānau felt once more empowered by the support of others. without doubt, in the safety and comfort of the wharenui, they were able to mourn clifford and to praise his gift to others. nevertheless, it is important that had the whānau not agreed to organ donation, their wishes would have been respected. clifford did indeed have the right to determine what might hap- pen to his own body organs at death while alive, but upon death this became a collective right within an autonomous family group that were strongly connected to the wider cultural collective (‘we had clifford at home (the marae) for one night and the wharenui (meeting house) was full of people telling stories about him’.). in short, clifford’s whānau connected to both the healthcare system and their own people by main- taining their cultural practices and beliefs within their interpretation of a social ethic. there should always be room in any organ donation services for the promotion of a socially focused and culturally inclusive ethical approach to organ donation. conclusion as is clear from this discussion, while there are shared ethical values and principles across brain death and end of life in intensive care, the reality of what happens at the bedside is very different. yet for all the clinical differences in managing the dead and dying in intensive care, there are shared goals: delivery of compassionate care; respect for indi- vidual autonomy with regard to choices at end of life, including pref- erence for organ donation; importance of consent and consensus in treatment decisions; and acknowledgement of the social cultural con- text of care. as different approaches to organ donation become main- stream, new challenges will arise for both clinicians and society as a whole, with continued debate on the ethics of organ donation and end of life. while organ donation is often theorised and debated alongside end-of-life care, the relationship of these two at the bedside is not so

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258 m. coombs and m. woods clearly articulated. further development is required to enable organ donation and end-of-life care to become comfortable companions at a time that is often uncomfortable and distressing for many. all end- of-life trajectories start with the same ethical and clinical dilemma—of how to identify the moment of death. they all end in the same place, with questions of how best to respect and acknowledge the deceased. it is the pathways in between that need greater acknowledgement in prac- tice and in policy. notes 1. whānau is the māori word for extended family. 2. anoxic/hypoxic brain damage is brain cell death resultant from no or little oxygen supplied to the brain. this often occurs following cardiac arrest. 3. ischaemic injury is damage to tissues resultant from reduction in or lack of blood supply. 4. intensivist refers to a doctor who specialises in the care of the critically ill, usually in intensive care. 5. tangi is more formerly known as tangihanga, and the māori word for funeral rites held on a marae. acknowledgements we would like to thank the donor families for so generously allowing the telling of their stories. thanks are also extended to janice langlands from organ donation new zealand for facilitating and gaining consent from the families. in addition, we thank mrs belinda tuari- toma, policy analysis, state sector effectiveness, te puni kōkiri iwi: ngati porou, tuwharetoa and te whānau apanui for her advice on discussion of the last case in this chapter. references australian and new zealand intensive care society. (2013). the anzics statement on death and organ donation. edition 3.2. australian and new zealand intensive care society. www.ebook3000.com

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10 organ donation practices and end-of-life care … 259 beauchamp, t. l., & childress, j. f. (2013). principles of biomedical ethics (7th ed.). oxford: oxford university press. bernat, j. l., capron, a. m., bleck, t. p., blosser, s., bratton, s. l., et al. (2010). the circulatory-respiratory determination of death in organ dona- tion. critical care medicine, 38, 963–970. berntzen, h., & bjørk, i. t. (2014). experiences of donor families after con- senting to organ donation: a qualitative study. intensive and critical care nursing, 30, 266–274. bion, j., & coombs, m. (2015). balancing cure with comfort: palliative care in critical care. palliative medicine, 29, 288–290. brinkman, s., de jonge, e., abu-hanna, a., arbous, m. s., de lange, d. w., et al. (2013). mortality after hospital discharge in icu patients. critical care medicine, 41, 1229–1236. cohen, e. (2006). organ transplantation: defining the ethical and policy issues. staff discussion paper, the president’s council on bioethics. https://bioeth- icsarchive.georgetown.edu/pcbe/background/staff_cohen.html. cook, d., & rocker, g. (2014). dying with dignity in the intensive care unit. new england journal of medicine, 370, 2506–2514. cooper, j., & kierans, c. (2016). organ donation, ethnicity and the negotia- tion of death: ethnographic insights from the uk. mortality, 21, 1–18. degroot, j., vernooij-dassen, m., hoedemaekers, c., hoitsma, a., smeets, w., et al. (2012). decision making by relatives about brain death organ donation: an integrative review. transplantation, 93, 1196–1211. donatelife. (2008). world’s best practice reform package: measure 2: organ and tissue authority. http://www.donatelife.gov.au/the-authoity/national- reform-agenda. escudero, d., valentın, m. o., escalante, j. l., sanmartın, a., perez- basterrechea, m., et al. (2015). intensive care practices in brain death diag- nosis and organ donation. anaesthesia. doi:10.1111/anae.13065. forsberg, a., flodén, a., lennerling, a., karlsson, v., nilsson, m., et al. (2014). the core of after death care in relation to organ donation—a grounded theory study. intensive and critical care nursing, 30, 275–282. flory, j., young-xu, y., gurol, i., levinsky, n., ash, h., et al. (2004). place of death: us trends since 1980. health affairs, 23, 194–200. gardiner, d., shemie, s., manara, a., & opdam, h. (2012). international perspective on the diagnosis of death. british journal of anaesthesia, 108(suppl. 1), i14–i28.

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260 m. coombs and m. woods grace, b. s., kara, t., kennedy, s. e., & mcdonald, s. p. (2014). racial disparities in pediatric kidney transplantation in new zealand. pediatric transplantation, 18, 689–697. hazlett, a. (2016). epistemic goods. in g. fletcher (ed.), the routledge hand- book of philosophy of well-being (pp. 259–270). london: routledge. howarth, g. (2007). death and dying: a sociological introduction. cambridge: polity press. international registry in organ donation and transplantation. (2014). international registry in organ donation and transplantation. final num- bers 2013. barcelona: international registry in organ donation and transplantation. international summit on transplant tourism and organ trafficking. (2008). the declaration of istanbul on organ trafficking and transplant tourism. clinical journal of the american society of nephrology, 3, 1227–1231. kesselring, a., kainzb, m., & kiss, a. (2007). traumatic memories of relatives regarding brain death, request for organ donation and interactions with professionals in the icu. american journal of transplantation, 7, 211–217. lazar, n. m., shemie, s., webster, g. c., & dickens, b. m. (2001). brain death. canadian medical association journal, 164, 833–836. long, t., sque, m., & addington-hall, j. (2008). conflict rationalisation: how family members cope with a diagnosis of brain stem death. social science and medicine, 67, 253–261. marks, w. h., wagner, d., pearson, t. c., orlowski, j. p., nelson, p. w., et al. (2006). organ donation and utilisation 1995–2004: entering the collabo- rative era. american journal of transplantation, 6, 1101–1110. mauri ora associates. (n.d.). māori pacific attitudes towards transplantation: professional perspectives: a report commissioned by the ministry of health for renal services, wellington: national renal service improvement project. mauri ora associates. retrieved from https://www.health.govt.nz/system/files/ documents/pages/maori-pacific-attitudes-towards-transplantation.pdf. mauss, m. (1990). the gift: the form and reason for exchange in archaic societies (w. d. halls, trans.). new york: w.w. norton. mckeown, d. w., bonser, r. s., & kellum, j. a. (2012). management of the heart beating brain-dead organ donor. british journal of anaesthesia, 108(suppl. 1), i96–i107. mullins, g. c., simes, d., & yuen, k. j. (2012). approaching families for organ donation–intensivists’ perspectives. anaesthesia and intensive care, 40, 1035–1039. www.ebook3000.com

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10 organ donation practices and end-of-life care … 261 ngahooro, j. (2010). farewelling body parts “would help maori donors”, from http://www.stuff.co.nz/national/poli- dominion post. retrieved tics/3563310/farewelling-body-parts-would-help-maori-donors. nikora, l. w., masters, b., & te awekotuku, n. (2012). final arrangements following death: maori indigenous decision making and tangi. journal of community and applied social psychology, 22, 400–413. organ donation new zealand. (2014). annual report. organ donation new zealand. auckland: organ donation new zealand. persad, g., wertheimer, a., & emanuel, e. j. (2009). principles for allocation of scarce medical interventions. the lancet, 373, 423–431. sanner, m. a. (2007). two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event. journal of critical care, 22, 296–304. scheunemann, l. p., mcdevitt, m., carson, s. s., & hanson, l. c. (2011). randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. chest, 139, 543–554. senouci, k., guerrini, p., diene, e., atinault, a., claquin, j., et al. (2004). a survey on patients admitted with severe coma: implications for brain death and organ donation. intensive care medicine, 30, 38–44. shaw, r. m., & webb, r. (2015). multiple meanings of “gift” and its value for organ donation. qualitative health research, 25(5), 600–611. shemie, s. d., hornby, l., baker, a., teitelbaum, j., torrance, s., young, k., capron, a. m., bernat, j. l., noel, n. & the international guidelines for determination of death phase 1 participants, in collaboration with the world health organization. (2014). international guideline development for the determination of death. intensive care medicine, 40, 788–797. simmerling, m. (2007). beyond scarcity: poverty as a contraindication for organ transplantation. ama journal of ethics, 6, 441–445. siminoff, l. a., & lawrence, r. h. (2002). ‘knowing patients’ preferences abut organ donation: does it make a difference? journal of trauma, 53, 754–760. siminoff, l. a., lawrence, r. h., & zhang, a. (2002). decoupling: what it is and does it really help increase consent to organ donation? progress in transplantation, 12, 52–60. statistics new zealand. (2015). national population estimates: at june 30, 2015. retrieved from http://www.stats.govt.nz/browse_for_stats/ population/estimates_and_projections/nationalpopulationestimates_ hotpat30jun15.aspx.

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262 m. coombs and m. woods truog, r. d., campbell, m. l., curtis, j. r., haas, c. e., luce, j. m., et al. (2008). recommendations for end-of-life care in the intensive care unit: a consensus statement by the american college of critical care medicine. critical care medicine, 36, 953–963. vathsala, a. (2004). improving cadaveric organ donation rates in kidney and liver transplantation in asia. transplantation proceedings, 36, 1873–1875. waitematā district health board. (2003). maori values and concepts (tikanga). māori health services. takapuna: waitematā district health board. watson, c. j. e., & dark, j. h. (2012). organ transplantation: historical per- spective and current practice. british journal of anaesthesia, 108(suppl. 1), i29–i42. webb, r., & shaw, r. (2011). whanau, whakapapa and identity in experi- ences of organ donation and transplantation. sites: a journal of social anthropology and cultural studies, 8(1), 40–58. wijdicks, e. f. m. (2002). brain death worldwide: accepted fact but no global consensus in diagnostic criteria. neurology, 58, 20–25. wilkinson, m., & wilkinson, s. (2015). the donation of human organs. in e. n. zalta (ed.), the stanford encyclopedia of philosophy. http://plato.stan- ford.edu/archives/spr2015/entries/organ-donation/. woods, m. (2010). cultural safety and the socio-ethical nurse. nursing ethics, 17, 715–725. woods, m. (2012). exploring the relevance of social justice within a relational nursing ethic. nursing philosophy, 13, 56–65. woods, m. (2014). tronto’s legacy: the socioethical practitioner in contempo- rary health care. in g. olthius, h. kohlen, & j. heier (eds.), moral bound- aries redrawn: the significance of joan tronto’s argument for political theory, professional ethics, and care as practice: ethics of care 3 (pp. 93–112). leuven: peeters. wunsch, h., harrison, d. a., harvey, s., & rowan, k. (2005). end-of-life decisions: a cohort study of the withdrawal of all active treatment in inten- sive care units in the united kingdom. intensive care medicine, 31, 823– 831. www.ebook3000.com

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10 organ donation practices and end-of-life care … 263 authors’ biography maureen coombs is a professor in clinical nursing (critical care) at the graduate school of nursing, midwifery and health at victoria university of wellington, new zealand. during her extensive healthcare career, maureen’s practice in intensive care directed her research platform on end of life. she is internationally recognised for her work in this area having published widely and presented extensively. martin woods is a senior lecturer in the graduate school of nursing, midwifery & health at victoria university of wellington, wellington, new zealand. he has an acknowledged background in healthcare ethics and educa- tion. he is currently the new zealand consultant for ethics & human rights with the international council of nurses.

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11 valued matter: anthropological insights on the (bio)political economy of organ exchange ciara kierans … [t]hings are thick with politics. and i mean politics with a lowercase “p”: not the politics of politicians, but a broad range of politics, from the micro to the macro scale, that are related as much to the power of humans as to the power of ideas and things. recognizing that things are thick with politics also draws attention to the crucial relation of things to people, of things needing to be embedded in a culture if you want them to work. (bijker 2007: 123) in writing about technologies which manage water, wiebe bijker shows how dikes and levees produce “technological cultures”, cultures which reflect different histories, but also different values, and which speak to issues of vulnerability, risk, uncertainty and inequality (bijker 2007). bijker shows, as others have also shown, that technological “things” can only be understood within their social context, and crucially as constit- uents of and within fields of human action. c. kierans (*) department of public health and policy, university of liverpool, liverpool, england e-mail: c.kierans@liv.ac.uk © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_11 265 www.ebook3000.com

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266 c. kierans organs-for-transplant are things of a different kind. they are at once “natural” and “technical”—biotic components whose capacity to perform a function stems from the matrix of technologies and techni- cal skills they are embedded within. moreover, that they come bound up with a whole range of social practices of exchange; that is, gifting, selling, coercing, stealing and so on, means they are no less “thick with politics” and, as such, are no less bound up with systems of value— the conceptual focus of this chapter. value provides a rich ground for understanding transplant medicine, particularly the ways it is made to work in different social and cultural sites and settings. it provides a critical way of thinking about the costs and benefits associated with the technological capacities of biomedicine, as well as to whom, when and under what conditions these costs and benefits are (unevenly) appor- tioned. approaching things in this way, as bijker implies, helps us see the politics in transplantation in a new light. understanding value and how it is both produced by and attributed to organ transplantation is, however, far from straightforward. to aid its explication, anthropological scholarship provides two main ways of thinking about the concept. first, there are those who work with value in plural form, treating it as synonymous with or stemming from a world view. approached in this way, the anthropologist will see what is valued and valuable as grounded in distinctive orientations to the world; in the way the world appears as real or meaningful to any group or soci- ety and, from there, what is of value within it (dumont 1986; viveiros de castro 2004). second, it is possible to treat value in terms of valu- ation, as a function of economy, as something produced in the course of various types of exchange, as a form as well as part of wider prac- tices (levi-strauss 1969 [1949]; mauss 1967; sahlins 1972; strathern 1974).1 in the context of transplant medicine, both conceptions of value play important roles and can be said in many significant ways to overlap: the former resonates with various social, cultural and bioethical perspec- tives invoked to explain the ways in which the transplant project has been accepted, rejected or specifically indigenised or the ways in which it might be said to be working for or against the human good (crowley- matoka 2005; hamdy 2012; lock 2001). the latter approach includes

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11 valued matter: anthropological insights … 267 studies that have sought the ways in which organs-for-transplant are understood as extensions of gift and/or commodity relations (kierans 2011, 2015; sharp 2006). this can include the quantifiable value expressed in extending life years, the economic value generated within related and expanding healthcare markets or indeed how the specific strategies bound up with the medical practicalities of organ exchange depend on calculated attributions of value to bodily matter (e.g. blood components, genes, cells, proteins and so on). thus, we might, for instance, turn to the codification and equivalence work that goes into tissue typing and antigen matching so that organs can be appropriately allocated and made to work when exchanged—the biostatistical values that give organs differential human value at a functional genetic level. this orientation to value is less an outcome of the biotechnical pro- cesses themselves, but instead owes much to the ways in which organs are problematised as “scarce resources”, a defining characteristic of transplant medicine that ensures that organs-for-transplant are things of value. said another way, organs are not scarce (and hence of value) in and of themselves, they are scarce relative to the ways in which they become and are made available for “use” under different socio- political arrangements. in fact, it is the trope of scarcity which can be said to be the discursive-organisational fulcrum upon which the transplant project hinges (sharp 2006). depicting and orienting to organs as scarce resources has given rise to the diverse ways in which organs are procured and allocated, practices which, in turn, as oth- ers have shown, generate all manner of inequalities of access, enti- tlement and outcome (cohen 2002; crowley-matoka 2005, 2016; hamdy 2012; kierans 2015; scheper-hughes 2000). these concerns are part of the political ground upon which transplant medicine oper- ates, a politics which has been further complicated by the expanded range of body parts, tissues, cells and genetic material which are today routinely exchanged between bodies (copeman 2009; waldby and mitchell 2006). these interrelations between forms of value and the body emerg- ing in the context of contemporary biotechnologies have generated a substantive body of thinking on the topic of “biovalue” (novas 2006; waldby 2002) and its correlate “biocapital” (helmreich 2008; rajan www.ebook3000.com

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268 c. kierans 2006; rose 2007), as well as the various processes of capitalisation on which they simultaneously depend and give rise to. while not wish- ing to gloss over what is a complex, growing and internally differenti- ated literature, the theoretical and conceptual advances made via this literature are often reflective of biotechnical developments (haw 2015; waldby and mitchell 2006) and closely related forms of public partici- pation (novas 2006; rabinow 1996) in anglophone countries. similar to other neologisms, such as “biopolitics” or “bioeconomy”, these new master categories run the risk of producing overly standardised, homog- enised or ideal-typical accounts of what may be happening in vari- able locations or, indeed, assume that there is something intrinsically of value/value-able or market capitalist about the body and its parts (birch and tyfield 2013). my work offers a departure by treating value as an emergent category, one that takes its meaning in relation to the con- texts, practices and sites where value is made relevant. by attending to the ordinary practices of mexico’s poor, a population only partially visible to a state apparatus, unlike in anglophone countries (kierans 2015), we can empirically follow how value emerges from the labour of patients and their families, making visible the ways in which biotechno- logical interventions, such as transplant medicine, are specifically bound up with the work of economy, the state and politics. in working, therefore, with a concept of value, and considering its capacity to illuminate the benefits and costs of transplantation, this chapter will take, as its focus, the second conception of value as set out above; that is, that which is generated out of forms of exchange and embedded in forms of situated practice. specifically, it will focus on the exchange of organs between living-related kidney donors in mexico— the principal means by which organs are procured in this country. the chapter draws attention to how this mode of procurement is situated within a particular political economy and intermeshed with the pro- duction of surplus value, as that which is produced over and above the long-term benefits of the so-called gift given and its capacity to pro- duce that most sought after value: health. the chapter will conclude with a short discussion on the importance of the mexican case for help- ing to interrogate what happens in other contexts, notably in the uk. the reason for doing so is to avoid taking the “smooth functioning” of

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11 valued matter: anthropological insights … 269 transplant medicine elsewhere for granted, and to show instead how a comparative perspective can open up and focus in on alternative modes of value-making. ethnographic focus this chapter draws on ethnographic fieldwork conducted in mexico during 2011 and 2012, the aim of which was to document the ways in which mexico’s uninsured population of chronic kidney disease (ckd) patients attempt to access intermediate forms of renal replacement therapy (rrt) and, ultimately, an organ trans- plant. access to this population was via the nephrology department at the hospital civil de guadalajara. the research strictly adhered to the ethical codes of practice set out in the requirements of the american anthropological association and the association of social anthropologists, uk. both written and verbal consent were taken. consent was verbal in cases where participants were uncomfortable providing a signature on forms, suspicious of bureaucratic processes or during informal ethnographic interviewing where it was not always appropriate to request written consent. ethics approvals were awarded by the university of liverpool and the hospital civil de guadalajara research ethics committees. an important aspect of the study was to examine transplant medi- cine within its political economic context: in this case, one where access to health care is administered via a complex social welfare system, con- tingent on labour-market position and where market-driven approaches increasingly overlap with state-supported infrastructures (eibenschutz et al. 2008; garcia-garcia et al. 2010; kierans et al. 2013). under this system, salaried workers in the private sector have health insurance pro- vided by instituto mexicano de seguro social (imss, mexican institute of social security). imss is mexico’s largest healthcare provider and supports 44% of the population. those working for the state, i.e. civil servants and federal workers, some 5% of the population, are cov- ered by instituto de seguridad y servicios sociales de los trabajadores de estado (issste, institute of social security and services for civil www.ebook3000.com

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270 c. kierans servants). private health insurers for highly paid workers constitute around 2% of the whole (inegi 2012). for those who are unin- sured; that is, not in formal employment, services are generally pro- vided at a subsidised rate by the clinics and hospitals of the secretaria de salubridad y asistencia (ssa)—the ministry of health and welfare. this system of health care is run with no premiums and no guaranteed package of services. services are limited and, though part state-subsi- dised, are heavily reliant on out-of-pocket payments at the point of use. it is, however, important to note, that the characterisation of these social insurance systems as distinct, is to a large extent, rhetorical. in practice, the mexican population move between these different points of access as jobs are both lost and gained or indeed as patients with access to social insurance attempt to circumvent bottle necks and wait- ing lists, particularly with regard to imss, the largest provider, choos- ing to forgo their social entitlements in favour of paying out-of-pocket. in a not dissimilar fashion, healthcare professionals, particular doctors, also move between healthcare systems, many holding positions across public and private organisations simultaneously. this, in turn, creates a conduit for patients to move between providers. the ethnographic grounds of this study, its sites, were then, by virtue of this mobility, gen- erated in situ by following patients and their families as they themselves knitted together “bespoke” regimes of care, and, in so doing, provided a practical way of “seeing” how the infrastructure of transplantation works in practice. to aid the discussion which follows, it is important for the reader to understand that there is no given or prescribed plat- form in mexico from which transplant medicine can be said to work or which could provide a vantage point for an authoritative overview of the organisational processes of organ exchange—the donating and receipt of organs. formal structures and processes here are blurry to the extreme, shading into each other in ways it is largely impossible to discern from the outside. most importantly, mexico’s complex health- care system largely militates against the building of a coherent national system of deceased organ sharing, as the various healthcare systems do not work easily together. as a result, mexico’s kidney population relies largely on organs procured from living donors, and for the most part living-related organ donors.2

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11 valued matter: anthropological insights … 271 what follows in this chapter is heavily indebted to contemporary work in the anthropology of transplantation as well as to a broader lit- erature within and beyond anthropology on ideas of value. drawing on marx and arendt, i argue that the production of value—in this particu- lar case, “surplus value”—is created as bodies and organs are worked on by public, para-public and private agents and agencies in preparation for transplantation. in the section which follows, i open with a vignette which provides the reader with an introduction to the circumstances poor, uninsured mexican patients face when they discover they need a new kidney. living-related organ donation: access without entitlement in a small two-bed isolation ward, in a mexican public hospital, carlos lay on top of his bed, watching a small portable tv. his small, thin child-like frame belied his 20 years of age. 15 of these years had been marked by progressively worsening kidney disease, the last three of which spent moving back and forward between forms of peritoneal3 and haemodialysis treatments,4 which he experienced across two pub- lic hospitals, three private clinics and in his own home. on this par- ticular day, he was recovering from long-awaited transplant surgery. his mother and organ donor, gloria, was resting in another ward, a floor below. both were relaxed and in good spirts. their doctors stressed that carlos and gloria were typical of the type of family they treated at the public hospital, meaning they were poor and on the margins of mexico’s complex healthcare and social insurance systems. as a con- sequence, they were faced with the necessity of financing not only the transplant surgery, but the litany of tests, required drugs, modalities of dialysis, all manner of associated equipment (biopsy needless, surgical thread, catheters, dialysate solution), various forms of medical care and hospital stays, necessary for preparing for an organ transplant. the care they were receiving at this public hospital was an outcome of years of negotiation with all manner of health professionals, public and private www.ebook3000.com

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272 c. kierans healthcare providers, pharmacists, lab technicians, psychologists, social workers and many others besides. to support this fragile, painstakingly built-up structure of care, gloria, with much help from family and friends living in mexico and the usa, invested great effort in raising funds. she had also appealed to people in her neighbourhood as well as local businesses to help finan- cially support carlos. to provide further help, his father had begun beg- ging on the streets of guadalajara. together, they ensured that every avenue to acquire much needed funds was exhausted. a local tv chan- nel, on hearing about their situation, agreed to fund the surgery as well as mother and son’s pre-transplant protocols and tests, on the condi- tion that gloria and carlos participate in a special interest programme on organ transplantation. the tv channel would trace the progress of donor and recipient. it would emphasise the debt of gratitude carlos felt towards his mother, the appreciation both mother and son had for their medical team, not to mention their wish to give thanks to god and, of course, the tv channel for financing and supporting the opera- tion. when i left mother and son recuperating in their hospital beds, i was made aware by the doctors of the all-too-real risk of losing the kidney, particularly given their next challenge, which was to raise more money to cover the costs of cyclosporine, the immunosuppressant that carlos would need to prevent his body from rejecting the new kidney. the challenges faced by families like carlos’s are all too common for the increasing numbers of ckd patients who attempt to access transplant medicine with no form of social insurance and few welfare entitlements, despite very recent attempts at healthcare reform.5 their situation speaks to much broader global problems: increasing economic insecurity, the rising incidence of chronic disease and the entrench- ment of commodified healthcare. as comparatively more stable welfare systems are experiencing the erosion of social protections and entitle- ments,6 the mexican case can provide lessons beyond its own national setting, a point i will return to in the concluding part of this chapter. mexico is characterised by profound social and health inequalities, divisions which have been amplified rather than ameliorated by ongo- ing waves of political and economic reforms and the increased mar- ketisation of health care. as a mixed corporatist/neoliberal welfare state

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11 valued matter: anthropological insights … 273 (esping-anderson 1990), mexico and its growing constituency of kid- ney patients help us to see what happens when health care is reconfig- ured and made primarily accessible via the “cash nexus”. the political economy at the heart of this situation is not merely a feature of health- care access, it is deeply implicated in the rise of ckd, the condition kidney transplantation attempts to alleviate. mexico, like other so-called low- and middle-income countries, has been facing a marked increase in ckd (garcia-garcia et al. 2010). this is partly attributed to the concomitant rise in hypertension and diabetes, a cluster of chronic conditions which have been intensifying in the context of a deregu- lated economy, environmental degradation, polluted water supplies and growing lack of access to unprocessed, healthy foods (correa-rotter et al. 2014; ramirez-rubio et al. 2013). the effects of these concerns are inevitably and unequally distributed among mexico’s poor and flexibilised work-force. in contexts defined by unequal, metered access to health care, the labour involved in what are complex attempts to secure care on a formal level cannot be underestimated for families like carlos’s. that labour demands a detailed examination, is one i demon- strate below. it is important to emphasise, that without a synoptic view of health- care provision or visible “topology” of transplant medicine, mexico’s uninsured ckd families embark on extraordinary and, in many cases, impoverishing journeys to access care. the labour involved includes, among many other things, not only the need to secure relevant renal replacement therapy but, in many cases, appropriate and timely diagno- ses. for many patients, diagnosis occurs when their kidneys are already in the end stages of functioning, often after a litany of misdiagnoses. by whichever route patients come to be diagnosed, what is common to all is the effort required to identify and access complex regimes of care. this can involve sourcing medications, via mexico’s expansive and growing system of private pharmacies, the labyrinth of black market street sellers for close-to or beyond sell-by-date medications, acquiring samples from pharmacies, medical staff and drug companies, informal medication-exchanges with other patients, often facilitated by patient associations, charities, doctors or serendipitous encounters. attempts to access modes of dialysis as well as routine tests and examinations, www.ebook3000.com

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274 c. kierans require patients and their families to request referral letters from their doctors. these referrals do not move patients along a predetermined pathway to care, but are, instead, letters of introduction, which legiti- mise a family’s capacity to negotiate access, particularly to new technical forms of care, much of which are organised via private clinics or phar- maceutical companies. these letters also help justify visits to charities, philanthropic organisations, social assistance programmes or private sector organisations in order to appeal for financial aid. they are, in effect, critical cultural documents that function as passports for mov- ing between the different strata of support that practically underpins mexican healthcare. the labour involved is continual, unpredictable and highly contingent on the willingness of others. it requires, to draw on latour (1987), extraordinary “trials of strength” (see kierans 2015 for discussion). these “trials of strength” reflect hannah arendt’s orientation to “labour” as distinct from “work”. labour, for arendt, “is that activity which corresponds to the biological processes and necessities of human existence, the practices which are necessary for the maintenance of life itself. labor is distinguished by its never-ending character; it creates nothing of permanence, its efforts are quickly consumed, and must therefore be perpetually renewed so as to sustain life” (arendt 1958: 7). work, by contrast, has a very different temporal signature and signifi- cance: it generates a world of things, things which endure, often well beyond the activity of creation. acquiring an organ transplant in mexico requires arendtian labour, and it is through this unrelenting and repeated activity that we learn something crucial about the compromised but indispensable status poor bodies have within transplant medicine, the manner in which value is created and the form it ultimately takes. as mexican families amass resources and forms of care, they draw into orbit diverse social relations, comprising not only kinship and friendship networks, state, welfare and healthcare services, but also a multitude of private sector interests: pharmacompanies, medical suppliers, laboratories and pharmacies; the doctors who shift from being state actors to part of private enterprise depending on the manner in which they are approached and the new science and technology capabilities which have emerged in the presence

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11 valued matter: anthropological insights … 275 of a growing transplant industry. it is the labour of mexican patients and their families, which makes the social relations at the heart of trans- plant medicine in mexico visible and understandable for the anthropol- ogist ethnographer. as families like carlos’s journey between various public and private healthcare providers, clinics and laboratories, they pay for everything: hospitalisation; surgical procedures; routine check-ups and tests; dialysis; pre-transplant protocols and tests; biopsy needles; stitching for wounds; disinfectant; antibodies and medications. all of this on top of travel costs, dietary costs, structural costs for home dialysis, informal care-giv- ing and the loss of formal earnings. resources are obtained by lobbying, by paying insurance premiums, by appeals to networks of family and friends, by selling land, property and inheritances and by begging—all channelled back into the systems which necessitated the labour in the first place and which will continue to demand it into the future. at the heart of this labour is the human body, more specifically the place of the donated organ within it—the actual thing which the activ- ity of uninsured mexican families consolidates around. the collective efforts involved in the transfer of this organ from one body to another effectively transforms the body into an extended “worksite”, one which is then harnessed to generate surplus value: capital for others over and above the use value of the organ itself. this is done via an elaborated infrastructure of diagnostic tests, pharmacological treatments, surgical interventions, medical supplies, etc., all of which help to link up public/ private and state/market relations. the capacity of a donated organ to bring a range of other goods and benefits into circulation raises impor- tant analytical questions about whether organs can ever really acquire much stability as gifts or commodities, objects of exchange around which we might imagine distinct constituencies of givers and receivers or buyers and sellers (kierans 2011; moazam et al. 2009; sharp 2006; waldby and mitchell 2006). these distinctions which are often drawn upon in descriptions of organ transfer tend to fail us when we begin to chart empirically the increasingly complex ways in which the body and its parts are taken up and used for medico-corporate ends. such accounts do not reflect our complex negotiated relations to contempo- rary modes of exchange (parry 2008). www.ebook3000.com

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276 c. kierans for gloria to donate her kidney as a “gift” to carlos, she had to resource it, financially and morally.7 for carlos to receive this gift from his mother, it had to be bought back through similarly complex financial and moral arrangements. the nature of the exchange tak- ing place does not suggest a gift given freely, but one leveraged at great cost and on several levels at once. this is a gift that is both predicated on and generative of capital, one which proliferates further commodi- ties (medications, catheters, biopsy needles and so on), all of which are incorporated in momentarily fixing the organ in place as a “gift”. the compromised, multiply-hybridised character of these “actually exist- ing” forms of exchange create difficulties in working with attenuated use-value and exchange-value distinctions associated with structuralist or classical political economy perspectives (for further discussion, see foster 2011, 2013; tsing 2009, 2013). they teach us that value cannot be automatically attributed to organs as things that can be exchanged pointing us instead to how the particular processes of exchange, and the social relations which underpin them, create the conditions for value production, indeed show it to be parasitic on the ordinary labour of others (jones and mair 2016). in turn, we also see the exploitation of such labour is neither static nor uniform (taussig 1980; wolf 1982). anna tsing takes up similar concerns in her work on the multi- plex relations of production and exchange which underpin the supply and transformation of the matsutake mushroom. tsing questions the taken-for-granted logics at play when commodities are understood to define the value system under capitalism “with little consideration over the processes of transformation that they undergo” (tsing 2013: 22). in the course of her work, she demonstrates the importance of under- standing how the production and exchange of things internally relate to value production, as part of the economic heterogeneities which underpin capital rather than as processes which are already pre-formed and determining in character. these processes of transformation, to borrow from appadurai, might be described as “tournaments of value”, “complex periodic events that are removed in some culturally well- defined way from the routines of economic life” but are nevertheless central to it (appadurai 1983: 21). while the value produced by the appropriated labour of poor mexican families might well be removed

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11 valued matter: anthropological insights … 277 from the routines of economic life, it paradoxically suggests a “pure” form of capitalism, because those who labour to produce organs-for- transplant do so in the absence of any capacity (or requirement) to reproduce their own efforts. in this case, the production of value is vampiric; because it works in the space where labour is directed to maintaining life, by staving off its end, it extracts without restoration. the profound struggle by living-related organ donors and recipients to stay alive is, therefore, the very basis for the production of profit. all that flows from this only serves to diminish the capacity of those affected—not just the patient but their extended families—to ensure that their health is protected and their everyday lives reproduced. in the absence of adequate social protections, and where an emphasis on rights and entitlements is little more than rhetorical, those with the least resources to expend on their health must to do so to the point of utter depletion. arendt suggests that “the human capacity for life in the world always implies an ability to transcend and to be alienated from the processes of life itself, while vitality and liveliness can be conserved only to the extent that men are willing to take the burden, the toil and trouble of life, upon themselves” (arendt 1958: 120). in a context of radical responsibilisation for health and for life, it is important to ask what value transplant medicine has when efforts to extend life come at such a profound cost, when families like carlos’s are systematically stripped of their assets and so have little capacity to maintain themselves in the process. even in the event of successful organ transplant, many families are unable to support the costs of immunosuppression and the further medical care required to protect and ensure the longer-term survival of their transplanted kidney. that they must enter relations of economic bondage and sacrifice their finances, property and security is made more destabilising still in a context where ckd is far from a rare occurrence, but in fact, is rapidly increasing, multiplying its effects within households and across the frag- ile constituency of already poor families. the sacrifices that ckd entails could as michael lambek (2008: 146) contends “be the most profound of ritual acts, serving as the ultimate ground of value”. the creation of (surplus) value out of the very struggle to stay alive surely stands as a www.ebook3000.com

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278 c. kierans critical instance of the infusion of life by politics (arendt 1958), which, when harnessed to the interests of others, can do little more than fuel a downward spiral of catastrophic impoverishment and further incapaci- tation. the mexican case shows what happens when resource-intensive “bio- technological solutions” are progressively dis-embedded from a wider social infrastructure of welfare, entitlement and rights (esping-anderson 1990; polayni 1944). transplant medicine is not only left to the vagar- ies of new markets in health care, but also to the ad hoc and fleeting encounters that patients and their families must exploit in order to tem- porarily link together a complex of treatments therapies, trials and tests. the organisational difficulties which follow the profound lack of a healthcare infrastructure are routinely pointed out by mexican health professionals as a way of marking out what they feel to be the radical differences between health care in mexico and countries such as the uk, where i live and work. hospital doctors, to illustrate, would go out of their way to show me how bad things were in mexico. they would declare that no transplant programme could possibly be initiated in the uk without appropriate funding, whereas in mexico, they start in the hope that money will be found as times goes on. while it is difficult to argue with their assessment at one level, such sharply drawn national comparisons have the unfortunate effect of making invisible elsewhere what was dramatically and continually in relief for the mexican medi- cal staff: a political economy of health care, experienced in and through a lack of adequate resources, falling levels of medically trained person- nel, inadequate numbers of hospital beds, poor medical equipment, insufficient varieties of drugs or stocks of blood, weak administrative infrastructures, poorly coordinated strategies for health promotion and health education, and many other things besides. transplant medicine in the uk was assumed to function in such a way that it broadly fit to demand, resources and general service expectations. that much of the above is present in the uk too suggests a more complex comparative account is needed.

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11 valued matter: anthropological insights … 279 mexico—all of our futures? i want to tease out, in this final section, how more complex compari- sons might help us to arrive at a clearer understanding of the ways in which different technological cultures produce different systems of value. if the mexican case is one which foregrounds an exploitative political-economy via the disruptive character of transplant medicine, transplant medicine in the uk, at least superficially, appears to reflect back a smoother organisational infrastructure supported by a well- entrenched welfare state. different to the interactional proximity of donor and recipient in mexico, the uk has relied on a system of deceased organ donation for more than 50 years, a system fundamentally embedded within bureau- cratic national governmental arrangements. the uk was one of the first european countries to adopt a national programme of haemo- dialysis, established in the context of a maturing welfare state. funds come directly from uk taxation and are delegated to the department of health (dh). the provision of transplant services is enshrined in the national service framework for renal services (nsf), which has produced a standardised patient “pathway”, comprising a set of insti- tutional “signposts”, incorporating patient referral and assessment, a programme of preparation for starting renal replacement therapies (rrts), which includes the provision of dialysis, transplantation and end of life care. unlike mexican patients, british patients are made aware of what they are entitled to and how their treatment will pro- gress. broadly reflective of the weberian bureaucratic ideal, the organi- sation and access of services can be described as predictable, routine and with explicit formalisations of responsibility. what is more, the distri- bution and spread of ckd in the uk is charted via the national renal registry. functioning as an apparatus for “seeing” ckd, its methods are coeval with the techniques available for treating the condition. as a site of knowledge production (ruppert 2012), it systematically collects and analyses data from renal units on the incidence, management and outcome of renal disease. this integrated approach to counting renal patients has produced a tightly governed population, with the incidence of and treatment for ckd comprehensively mapped. www.ebook3000.com

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280 c. kierans despite the apparent functioning of this system, not everyone who needs a transplant gets one. what is more the rhetoric of entitle- ments to health services, free at the point of delivery, does not ensure that the supply of deceased-organs-for-transplant—dependent on vol- untary public participation—meets demand. organs are inevitably rationed, which implies that inequalities of access follow, with benefi- cial treatments unavailable for some.8 to manage this process, patients are “wait-listed” according to criteria such as time on the organ wait- ing list, severity of illness, human leukocyte antigen (hla) matching, prognostic information, age of recipient. these variables are, in turn, translated into quantifiable values, giving rise to a points-based sys- tem, used to generate another body of metrics: quality adjusted life years (qalys)—that is, the number of “healthy” years a person can be expected to live as a result of an intervention. needs-based resourcing, rather than payment-based resourcing, generates a system of value to help determine the relationship of cost to benefit. while this is argu- ably a different production of value than in mexico, it is also one which ostensibly determines who gets access to what. the dh has estimated that kidney transplantation is cost effective at a threshold of £30 k per qualy (cronin 2016). however, as demand for organs has out- stripped supply, there are, today, almost 10,000 people waiting for a transplant, with many dying before they get to the head of a queue organised according to a range of bureaucratic and organisational for- matting requirements. what is important in all of this is that inequalities in access to organ transplantation have their own local registers within the particular polit- ical economies of health care of which they are a part. in the uk, for example, this has found expression in the difficulties experienced by members of minority ethnic groups in acquiring organs-for-transplant.9 minority ethnic groups have a statistically greater need for a kidney transplant, yet are comparatively less likely to obtain one, a problem often framed as owing to poor levels of donation among such classified groups. as i have argued elsewhere, this is less a social or cultural con- cern than an outcome of the scientific practices which underpin blood and antigen matching (for discussion, see kierans and cooper 2011).

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11 valued matter: anthropological insights … 281 in comparing mexico and the uk, it would be an over-simplification to suggest that what is at stake here is an integrated healthcare system, supported by the welfare state and dependent on a deceased-donor model of organ procurement producing a different set of values upon which access to treatments hinge. the nature of welfare at play here is far from stable. it is one increasingly vulnerable to encroaching market forces, a concern which draws the mexican situation critically back into view. to explain, 2 years after the 2008 international banking crises, the uk coalition government embarked on an ambitious programme of austerity-led reform. the centrepiece was the health and social care act, 2012, designed to make substantial changes to the national health service and pave the way for far greater private sector involvement in the delivery of health care. operating under the mantle of a “patient- choice” agenda, the plan was for the private sector to absorb what were deemed the limitations of a bulky and inefficient bureaucracy. the gov- ernment vowed to make £22bn of savings, stripping back the nhs budget to a less than adequate £8bn per year (beatty and fothergill 2016). accompanying the drastic cut-back to health services was a plan to localise power and funding to general practitioner commissioning groups, effectively giving them control over 80% of frontline services (nhs white paper 2010). inevitably, this has raised profound con- cerns among healthcare professionals, among others, as to whether the interests of patients are best served by these new arrangements. among many other forms of specialist care, organ transplantation is just one example of a domain where gps may not have appropriate decision- making skills. the commodification process which follows the health and social care act has already seen the replacement of services critical to transplant medicine (e.g. nationally supported blood services) cut in the face of advancing private healthcare provision (guardian editorial 2013). this process, many believe, is leading to the subordination of service quality to profitability (leys and harriss-white 2012) and is a process which will continue to gather momentum, unless political bar- riers are put in place. this, if we are to take the work of karl polayni seriously, is unlikely. what he refers to as a “‘double movement” in his- tory is one where the realisation that state controls are needed to curb commodification, occur without parallel identifications of mechanisms www.ebook3000.com

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282 c. kierans able to do so (polayni 1944). the “benign” practices of valuation associ- ated with an older political economy of state-led care survive the trans- lation to the new market-led one but take on a rather different cast under such conditions, with “value” acquiring newly monetised and monetisable implications. the mexican case, therefore, stands in close relation, rather than in comparison, as a sober forewarning of the cata- strophic harm that extends itself as public goods, like health, are not only transformed into commodities, but are increasingly used to pro- vide the material basis for generating capital. moreover, it affirms marx’s prophecy that “… the increasing value of the world of things proceeds in direct proportion the devaluation of the world of men” (marx 1970 [1844]), and, in these circumstances, of life itself. conclusion almost by definition, we could say that the production of value is intrinsic to the transplant project. without it donors cannot be matched to receivers and systems of access cannot be put into play. inequalities of access and outcome are also inherent to the transplant story, as they are fundamentally vulnerable to the conditional depend- ence of technologised medicine on the bodies of others. however, these integral systems of value take on greater salience and urgency when seen in the context of the political economies of health care they are grounded in. attending to the situated political and moral-economic conditions of resourcing provides an important way of considering how transplant medicine produces its effects: whether good or bad. in a comparative and relational rather than relative mode, it also requires us as social science researchers to pay close attention to the instructional significance of the ethnographic case, to ask how such cases provide a view to what is happening elsewhere. if the mexican case is indeed a harbinger, a setting where the logic of the arrangements we collectively live under can be seen in a clear-cut way particularly in terms of the way transplantation links life, labour and value, perhaps all our futures are at risk.

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11 valued matter: anthropological insights … 283 notes 1. see the special edition of hau discussing the value concept within anthropology edited by giovanni (2013). 2. roughly 20% of kidneys originate from deceased donors, the remain- der coming from living-related donors, a fact that places the donation of organs firmly within the context of family rather than the state, creating additional pressures for the poor and the uninsured (rios et al. 2010). 3. peritoneal dialysis (pd) is a form of dialysis, where the inside lining of the stomach acts as a natural filter to remove waste products from the blood. continuous ambulatory peritoneal dialysis (capd) is a com- mon form of pd practiced in mexico. it is machine-free and is claimed to be capable of being performed while the patient goes about their nor- mal, everyday activities, therefore “continuous”. 4. in haemodialysis, blood is pumped out of the body through a tubing system into an artificial kidney machine, by virtue of a connection to the body (a fistula) usually placed in the wrist. it is then returned cleansed to the body via the same connection. 5. in 2001, a much criticised package of reforms was introduced as a response to the deficiencies of the healthcare system. known as seguro popular (popular health insurance), its aim is to universalize public health access for the poor by shifting the federal budget to demand- based allocation, separating purchaser and provider, and integrating sub- sidies by federal and state governments, along with premiums paid for by families, to insure against risk and medical impoverishment. designed in accordance with neoliberal, market principles rather than a social rights agenda, it was initiated by julius frenk, health minister for partido accion nacional (pan). seguro popular has been controversial. with lit- tle independent analysis, claims have been made that mexico now enjoys universal healthcare coverage, claims that few with any direct experience of the system would support (eibenschutz et al. 2008; laurell 2011). 6. see burstrom (2015) and dahlgren (2014) for a discussion on mar- ket-driven health care in sweden and the rise of inequalities; beatty and fothergill (2016) for a discussion on the uneven impact of welfare reform in the uk; and hacker and pierson (2010) on the pathologies of the ‘winner-takes-all’ system in the usa. 7. a number of authors, myself included, have drawn on the gendered character of organ donation, particularly in mexico (crowley-matoka www.ebook3000.com

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284 c. kierans 2016; kierans 2015), where women’s roles have been culturalised into the “burden of caregiving” more generally (digirolamao and salgado de snyder 2008). it is, however, beyond the scope of this chapter to discuss organ donation in purely gendered terms, given the complexi- ties of social and familial relations that underpin both organ failure and attempts to access transplant medicine. 8. this is rather different to what richard titmuss envisaged when writ- ing about the provision of blood banks as a public service in 1970 in the gift relationship. when explicating practices of bio-valuation ask- ing who is involved, how they are involved, when, why and under what conditions is critical. when we take into account these dimensions, the sorts of practices being discussed here, which depend on complex links across scientific, medical and governmental sites and at various levels (e.g. “local”, “regional” and “national”—themselves bureaucratically con- structed and stabilised administrative categories internal to the system), contrast markedly with the picture titmuss outlines. 9. in the uk, patients classified as african caribbean and south asian heritage are described as three to four times more likely than the white british population to develop end stage kidney disease (esrd). according to official statistics, they constitute approximately 28% of the kidney transplant list, but only 4% of deceased organ donors. this “sta- tistical problem” has driven health policy, health promotion and health education initiatives to foster greater ‘in-group’ responsibility among potential donors for renal patients, and orientation to a problem predi- cated on the assumption that inequalities of access are driven from with- out and not within health care. references appadurai. a. (1983). the social life of things. in a. appadurai (ed.), the social life of things: commodities in cultural perspective (pp. 1–72). cambridge: cambridge university press. arendt, h. (1958). the human condition. chicago: university of chicago press. beatty, c., & fothergill, s. (2016). the impact of welfare reform in the uk: the financial losses to places and people. oxfam: joseph rowntree foundation. bijker, w. (2007). dikes and dams thick with politics. isis, 98(1), 109–123.

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11 valued matter: anthropological insights … 285 birch, k., & tyfield, d. (2013). theorizing the bioeconomy: biovalue, bio- capital, bioeconomics or … what? science technology human values, 38(3), 299–327. burstrom, b. (2015). sweden—recent changes in welfare state arrangements. international journal of health services, 45(1), 87–104. cohen, l. (2002). the other kidney: biopolitics beyond recognition. in n. scheper-hughes & l. wacquant (eds.), commodifying bodies (pp. 9–30). london: sage. copeman, j. (2009). gathering points: blood donation and the scenography of `national integration’ in india. body and society, 15, 71–99. correa-rotter, r., wesseling, c., & johnson, r. j. (2014). ckd of unknown origin in central america: the case for a mesoamerican nephropathy. american journal of kidney disease, 63(3), 506–520. cronin, a. j. (2016). increasing understanding on the quality and alloca- tion of organs for transplants. retrieved july 20, 2016, from http://www. kcl.ac.uk/sspp/policy-institute/projects/healthpolicy/transplant-organ- allocation.aspx. crowley-matoka, m. (2005). desperately seeking normal: the promise and perils of living with kidney transplantation. social science and medicine, 61, 821–831. crowley-matoka, m. (2016). domesticating organ transplant: familial sacrifice and national aspiration in mexico. durham, nc: duke university press. dahlgren, g. (2014). why public health services? experiences from profit- driven health care reforms in sweden. international journal of health services, 44(3), 507–544. department of health white paper. (2010). equity and excellence: liberating the nhs. london: tso. digirolamo, a. m., & salgado de snyder, v. n. (2008). women as primary caregivers in mexico: challenges to wellbeing. salud publica de mexico, 50(6), 16–22. dumont, l. (1986). essays on individualism: modern ideology in anthropological perspective. chicago: university of chicago press. eibenschutz, c., et al. (2008). inequality and erroneous social policy produce inequity in mexico. rev salud pública, 10, 119–132. esping-anderson, g. (1990). the three worlds of welfare capitalism. cambridge: polity press and princeton: princeton university press. www.ebook3000.com

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286 c. kierans foster, r. j. (2011). the uses of use value. in d. zwick & j. cayla (eds.), inside marketing: practices, ideologies, devices (pp. 42–57). oxford: oxford university press. foster, r. j. (2013). things to do with brands: creating and calculating value. hau: journal of ethnographic theory, 3(1), 44–63. garcia-garcia, g., renoirte-lopez, k., & marquez-magaña, i. (2010). disparities in renal care in jalisco, mexico. semin nephrol, 30, 3–7. giovanni, d. a. (2013). a note from the editor: value and giving. hau: journal of ethnographic theory, 3(1): i–ii. hacker, j. s., & pierson, p. (2010). winner-take-all politics: how washington made the rich richer and turned its back on the middle class. new york: simon & schuster. hamdy, s. (2012). our bodies belong to god: organ transplants, islam, and the struggle for human dignity in egypt. berkeley: university of california press. haw, j. (2015). from waste to (fool’s) gold: promissory and profit values of cord blood. monash bioethics review, 33(4), 325–339. helmreich, s. (2008). species of biocapital. science as culture, 17(4), 463–478. inegi, statistic and geography national institute. (2012). retrieved june 16, 2012, from www.censo2010.org.mx. jones, p., & mair, m. (2016). genealogy, parasitism and moral economy: the case of uk supermarket growth. in d. whyte & j. wiegratz (eds.), neoliberalism and the moral economy of fraud (pp. 86–98). london: routledge. kierans, c. (2011). anthropology organ transplantation and the immune sys- tem: resituating commodity and gift exchange. social science and medicine, 73, 1469–1476. kierans, c., & cooper, j. (2011). organ donation, genetics, race and culture: the making of a medical problem. anthropology today, 27(6), 21–25. kierans, c., mercado, f., garcia-garcia, g., hernandez-ibarra, e., & padilla, c. (2013). when health systems are barriers to healthcare: challenges faced by mexican kidney patients. plos one, 8(1), e54380. kierans, c. (2015). biopolitics and capital: poverty, mobility and the body-in- transplantation in mexico. body and society, 21(3), 42–65. lambek, m. (2008). value and virtue. anthropological theory, 8(2), 133–157. latour, b. (1987). science in action: how to follow scientists and engineers through society. cambridge: harvard university press. laurell, a. c. (2011). los seguros de salud mexicanos: cobertura universal incierta. ciência & saúde colectiva, 16(6), 2796–2806. levi-strauss, c. (1969 [1949]). the elementary structures of kinship (j. h. bell & j. r. von sturmer, trans.). boston: beacon press.

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11 valued matter: anthropological insights … 287 leys, c., & harriss-white, b. (2012). commodification: the essence of our time. open democracy uk. retrieved 10 july, 2016, from https://www. opendemocracy.net/. lock, m. (2001). twice dead: organ transplants and the reinvention of death. california: university of california press. marx, k. (1970 [1844]). economic and philosophical manuscripts of 1844 , trans m. milligan. london: lawrence and wishart. mauss, m. (1967). the gift: forms and functions of exchange in archaic societies. new york: norton library and routledge & kegan paul. moazam, f., et al. (2009). conversations with kidney vendors in pakistan an ethnographic study. hastings center report, 39(3), 29–44. novas, c. (2006). the political economy of hope: patients organizations, sci- ence and biovalue. biosocieties, 1(3), 289–305. parry, b. (2008). entangled exchange: reconceptualising the characterisation and practice of bodily commodification. geoforum, 39(3), 1133–1144. polayni, k. (1944). the great transformation: the political and economic origins of our time. boston: beacon press. rabinow, p. (1996). artificiality and enlightenment: from sociobiology to biosociality. in essays on the anthropology of reason. princeton, nj: princeton university press. rajan, k. s. (2006). biocapital. durham: duke university press. ramirez-rubio, o., et al. (2013). an epidemic of chronic kidney disease in cen- tral america: an overview. postgraduate medical journal, 89(1049), 123–125. rios, a., et al. (2010). attitudes toward living kidney donation in transplant hospitals: a spanish, mexican, and cuban multicenter study. transplant proceedings, 42(1), 228–232. rose, n. (2007). molecular biopolitics, somatic ethics and the spirit of bio- capital. social theory and health, 5(1), 3–29. ruppert, e. (2012). the governmental topologies of database devices. theory, culture and society, 29(4–5), 1–21. sahlins, m. (1972). stone age economics. oxfordshire: routledge. scheper-hughes, n. (2000). the global traffic in human organs. current anthropology, 41(2), 191–224. sharp, l. (2006). strange harvest: organ transplants, denatured bodies, and the transformed self. berkeley: university of california press. strathern, a. (1974). ongka’s big moka: the kawelka of papua new guinea, dir. c. nairn. disappearing world series: great britain. taussig, m. (1980). the devil and commodity fetishism in south america. chapel hill: university of north carolina press. www.ebook3000.com

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288 c. kierans the guardian. (2013). editorial: privatisation: blood money. retrieved 12 from https://www.theguardian.com/commentisfree/2013/ july, 2016, may/12/privatisation-blood-money-editorial. tsing, a. (2009). supply chains and the human condition. rethinking marxism, 21(2), 148–176. tsing, a. (2013). sorting out commodities: how capitalist value is made through gifts. hau: journal of ethnographic theory, 3(1), 21–43. viveiros de castro, e. (2004). perspectival anthropology and the method of controlled equivocation. tipitì: journal of the society for the anthropology of lowland south america, 2(1), 1–18. waldby, c. (2002). stem cells tissue cultures and the production of biovalue. health: an interdisciplinary journal, 6(3), 305–323. waldby, c., & mitchell, r. (2006). tissue economies: blood, organs, and cell lines in late capitalism. durham: duke university press. wolf, e. (1982). europe and the people without history. berkeley: university of california press. author biography ciara kierans is an anthropologist based in the department of public health and policy at the university of liverpool. her research is focused on latin america, the uk, and ireland. she has published widely on the politics of transplant medicine, studies of medical and scientific practice and the produc- tion of harm.

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12 towards social maternity: where’s the mother? stories from a transgender dad as a case study of human milk sharing fiona giles ‘it is incumbent on each of us to feed the other regardless of whether we have given birth to her… everyone must become “like a maternal body” through recognizing responsibility to others.’ (lee 2016) ‘one night when we were downtown together with tara, enjoying a street festival, i wondered out loud if i’d be comfortable nursing jacob there in public. a true ally, she immediately offered to nurse him for me, saying cheerily, ‘my boobs are your boobs!’. (macdonald 2016) introduction in this chapter i take as my starting point the different ways peo- ple informally share and sell human milk in contemporary western contexts, and the debate around the bioethical pitfalls and benefits of f. giles (*) university of sydney, sydney, australia e-mail: fiona.giles@sydney.edu.au © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_12 291

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292 f. giles this emerging phenomenon. in considering the practices of informal human milk exchange, i will draw from trevor macdonald’s memoir of breastfeeding as a transgender father, which demonstrates the capac- ity of a loose-knit community of facebookers, friends and neighbours in canada to sustain a baby for most of its first year of life, primarily on donated human milk to supplement macdonald’s supply. where’s the mother? stories from a transgender dad (2016) relates how macdonald strived exclusively to breastfeed his son, jacob, for the recommended first six months, while producing only a small amount of his own milk, as he had undergone chest surgery prior to planning a family. macdonald’s story illustrates many of the challenges of so-called exclu- sive breastfeeding, as well as the corporeal generosity and openness of a diverse network of individuals in aiding his objective. while i explore some of the ethical implications of informal human milk sharing, the essay also mounts a justification for this practice, based on a feminist acknowledgement of the value of maternal labour, together with an ethical defence of ‘embodied philanthropy’ (robert 2013). drawing from robyn lee’s and lissa skitolsky’s work in particu- lar, i explore the idea that humans have a moral responsibility to feed each other through broadening the concept of the maternal (lee 2016; skitolsky 2012). at the same time, there is an emerging feminist argu- ment in support of recognising the value of breastmilk as a commod- ity, since a market for human milk already exists, and has for most of human history (fentiman 2012; golden 2001; swanson 2014). i will conclude that these two approaches—of donation or sharing and the sale of human milk—need not be mutually exclusive. a regulated mar- ket, enabling payment to donors (or more accurately human milk pro- viders or wet nurses) and its sale to parents of children in need, could coexist with a culture of informal, unremunerated milk sharing based on informed consent within communities of parents. as the so-called sharing economy continues to grow across a range of services and prod- ucts—encouraged by digital technology and the need ‘to maximize the use of scarce resources’—so too has the sharing of food made by humans begun to more commonly include breastmilk (allen and berg 2014: 2).1 www.ebook3000.com

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12 towards social maternity: where’s the mother? … 293 macdonald’s story, together with research by others conducted with milk donors and parents of children in need, indicates that the moti- vation for sharing goes beyond altruism in at least two ways: through the psycho-social rewards of benevolence and mutuality and through opportunities for remuneration (fentiman 2012; gribble 2014; ronan 2015). the latter has expanded considerably in recent years, whether through informal milk exchange websites or via hospital-based milk banks and private-based human milk fortifier companies such as prolacta and medolac in the usa.2 it has become clear that many parents believe their babies could benefit from a regulated market for selling and buying human milk, through an expansion of the human milk banking network, through companies manufacturing human milk products, and through the development of other mechanisms for the safe exchange of this valuable bodily fluid. human milk as commodity as linda fentiman has pointed out, an extensive marketisation of human milk currently occurs, through the work of the human milk banking association of american (hmbana), and the uk and european milk banking associations (ukamb and emba) among others globally, including extensive networks in brazil, other parts of south america and northern europe, and smaller networks in australia and south africa. in 2015 there were 18 milk banks listed across the usa and canada with several more in development. this reflects growing demand for human milk. since 2011 many banks have been experiencing shortages and increasing their recruitment programmes, in large part due to the increase of informal sale and exchange via the internet (bindley 2011; bromberg bar yam 2010; bye 2016; dutton 2011). cost recovery is also part of the formal economy. although the milk that banks distribute is donated, the cost of screening, pasteurisa- tion, storage, and distribution is passed on to the parents of infants who receive it. donors receive equipment such as breast pumps and storage bags, and reimbursement for shipping from the milk banks, but usually no money. even so, at approximately us$3–5 per ounce, the cost to

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294 f. giles parents can be prohibitive, amounting to upwards of us$100 per day based on the quantity consumed by an average 6 months old (smith 2013; smith and ingham 2005). some insurance companies provide rebates for medicinal use of milk for premature and sick infants, signi- fying its legitimacy as a priced commodity within the health economy. the work of feminist economists, since marilyn waring argued the case in the 1980s, has proven its contribution to gross domestic product (smith 2013). furthermore, donated milk provides a supply for research that sup- ports the breastfeeding advocacy project through the advancement of scientific knowledge about its benefits to babies, as well as stem cell research, cancer prevention and treatment, and other medical applica- tions to children and adults. all of these contribute to human milk’s monetary value, despite the absence of recompense by most milk banks to their donors. since 2014, prolacta and medolac have begun paying for their milk, referring oddly to ‘paid donors’, and perhaps using this term to acknowledge its token valuation. according to the tiny treasures website operated by prolacta, they pay us$1 per ‘qualified ounce… reimbursement is for time and effort’ (prolacta bioscience 2013), implying that this calculation defies any realistic attempt at valuation. this arrangement also reinforces a continuation of the ideology of the gifting of milk rather than its fair exchange, while at the same time drawing it into a market economy. using screening methods including dna testing, blood tests, and post-collection bacterial testing of the milk, this supply is then used as the raw material for fortifiers supplied to premature wards for a considerable profit.3 since the revival of breastfeeding as a globally recognised pub- lic health issue in the 1980s, the promotion of breastfeeding has also amounted to the social marketing of human milk as a valued substance endorsed by governments. although social marketing does not usually entail monetary exchange, it is predicated on the principle of exchang- ing one (less desirable) behaviour for an alternative (more desirable) behaviour, which is promoted by the state in order to enhance the well- being of the population, and in turn, to reduce its health expenditure (hastings 2013). in addition to benefiting health or the environment, www.ebook3000.com

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12 towards social maternity: where’s the mother? … 295 social marketing promotes behaviour change as economically beneficial, through savings to both individuals’ and states’ health budgets. the commodification of human milk is nothing new. practised since antiquity, wet-nursing became a well-established form of labour from the sixteenth to the twentieth century, with the widespread paid employment of wet nurses by middle-class and aristocratic parents. payment to women for expressed milk provided to milk banks was also a respectable means for women to earn an income from the late nine- teenth century until as late as 1961, when the last milk bank paying women for their milk closed in boston (golden 2001; swanson 2014; wolf 1999). the bioethical underside of this economy was the finan- cial incentive for women to neglect or abandon their own children in order to earn money from feeding the offspring of wealthy employers, particularly in france during the eighteenth century. during slavery in the usa, black american mothers were also forced without payment to feed their white owners’ children at the expense of their own, at times resulting in the death of their offspring (golden 2001). as with many other forms of labour, exploitation through underpayment or coer- cion was a real danger. ‘theories of “lactational heredity”’ to determine the ‘good character’ of wet nurses, based on a theory that personality traits such as temperament, appearance, class, or race could be trans- mitted through nursing, reinforced discriminatory beliefs about the vir- tues, vices, weaknesses, and strengths of breastfeeding women (harrison 2016: 99; wolf 1999).4 after the decline of breastfeeding in the west during the twentieth century, and the closure of most milk banks as demand for human milk fell, cultural memory regarding the ease and relative safety with which human milk might be shared has faded. additionally, the hiv/aids and hepatitis c epidemics of the 1980s resulted in the closure of the few hospital-based milk banks that had continued to operate in this decade. in 1985 hmbana was established in order to restore the sup- ply for premature and sick infants in intensive care wards, though there was still scepticism regarding its therapeutic importance into the 2000s, even among neonatologists (giles 2003). it is still fda policy to dis- approve of human milk sharing on safety grounds, although la leche league (lll) leaders are now permitted to provide information and

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296 f. giles advice, as does the australian breastfeeding association website (tawla 2013). nevertheless, as gribble and hausman argue, ‘cultural dis- taste for sharing milk, not evidence-based research, supports these offi- cial warnings’; and there are risks in ‘all forms of infant feeding’ (2012: 275). with the growth of hmbana, and the focus of social marketing on health benefits, the medicalisation of breastmilk and its potential for contamination combined to remove it from the realm of a food to that of a medicine, with all its attendant rarefication (hausman 2003, 2011). in europe during the 1980s, screening protocols were intro- duced alongside stricter protocols for blood donating, without sig- nificant disruption to the milk banking networks. one indication of the more relaxed approach to human milk banking in europe is that healthy infants are provided with unpasteurised milk, with pasteuri- sation only required for premature or sick infants (shaw and morgan 2017). but as julie smith argues, the resistance to acknowledging human milk as a food product, and its production as labour, contin- ues to devalue it at the same time that its medical benefits have been mythologised as virtually magical (smith 2013). exclusive breastfeeding as exclusionary mothering the combination of a cultural forgetting of breastfeeding practices throughout the twentieth century and the fear of cross-infection dur- ing its initial period of revival in the 1980s set the scene for a distrust of human milk sharing. the scientific focus on milk’s nutritional and bio- chemical properties has been beneficial in promoting breastfeeding, but the attendant medicalisation has also resulted in increased surveillance of the health and lifestyle of lactating mothers and a sense of unease in relation to milk’s materiality and its embodied relationship to moth- ers and their offspring. knowledge of its biochemistry has not been matched with knowledge of its material properties, with the ‘yuk factor’ attributed to some mothers’ discomfort with breastfeeding, as well as www.ebook3000.com

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12 towards social maternity: where’s the mother? … 297 scientific resistance to researching its potential for therapeutic applica- tions beyond feeding infants (shaw 2004). some lactating mothers have expressed repugnance towards their own milk, since familiarity with its material qualities is obstructed by the focus on maintaining strict hygiene in relation to nipples, babies, and bottles, as well as the milk itself (giles 2003). as a result, it has been constructed as both danger- ous and precious simultaneously: literally and figuratively untouchable. additionally, the 1980s saw increased isolation of mothering within the nuclear family, the rise of a neo-liberal ideology espousing indi- vidual responsibility, and the popularity of attachment parenting, all of which have conspired to further isolate the nursing mother and the labour of mothering more generally (baker 2014; bueskens 2015; manne 2005; stephens 2012, 2015). attachment parenting is a term coined by us paediatricians, william and martha sears, based on the research of john bowlby published in the 1950s. it advocates continu- ous embodied care by a single caregiver, ideally the biological mother, for the first two to three years of life, with as few separations as possible, arguing that separations can cause irreparable emotional and psycholog- ical damage (bowlby 1953). it was likely not the sears’ intention to link neo-liberal mothering to attachment parenting, since their models come from communitar- ian and pre-industrial cultures which are thought to be more ‘natu- ral’ (sears and sears 2001).5 however, the practice of continuous and physically close mothering between biological mother and child has fortuitously suited the neo-liberal project that has risen to prominence during this period, elevating the responsibility of the individual fam- ily over the state for ensuring the health and well-being of its citizens, and constructing parents, whether single or partnered, as self-sufficient (bueskens 2015; hays 1996; manne 2005; sennett 2006; stephens 2012). in addition to fears of disease, environmental pollutants or con- taminants from food, alcohol, or other drugs, together with the risk of unhygienic storage and handling procedures, informal milk sharing thus also cuts across the contemporary idealisation of breastfeeding as a key element in the exclusionary maternal relationship. as rhonda shaw notes, any departure from exclusive (and exclusionary) breastfeeding,

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298 f. giles particularly through cross-nursing arrangements or milk sharing, ‘issues a direct challenge to the perceived sacrosanct wholeness of the kind of motherhood that authorises private and individualist constructions of maternal identity’ (2004: 288). this is what linda blum also identified as the conflation of exclusive breastfeeding with exclusive mothering (2000). lissa skitolsky puts this even more directly, arguing that we need to separate the provision of breastmilk from the provision of breastfeeding, so that a shared capacity to feed each other’s children might be fostered: feminists have long advocated for a more distributed child care frame- work…but have only recently recognized that our conception of mater- nity is tied to our conception of breastfeeding; what is currently viewed as a private act of nourishment that strengthens and sanctifies the mother-child bond, should, instead, be viewed as a potentially communal effort that wid- ens the responsibility of maternity and strengthens and sanctifies the commu- nity bonds with mothers and children. this would provide children with the benefits of learning to trust multiple caretakers and knowing firsthand an ethical community based on reciprocal, caring relations forged for the sake our well-being and nourishment.’ (2012: 72 [italics added]) the tension between individualist constructions of the maternal and its intersubjective practice is reflected in the varying terminology applied to breastfeeding and human milk sharing: on the one hand, breast- milk and breastfeeding is promoted as an intimate, even spiritually inflected substance and practice; and on the other hand, the more for- mal, slightly abstract term, human milk, is reserved for acts of dona- tion, sale, and research. as a cisgender female, my preference when talking with women, and in describing my own mothering practices, is to refer to breastmilk as an acknowledgement of its specific, embod- ied properties, and the many symbolic connotations of the term breast. similarly, macdonald refers to breastfeeding and breastmilk through- out his memoir, despite preferring to think of himself as chested rather than breasted since his top surgery. however, some transgender men nursing their offspring have adopted the term ‘chestfeeding’ as well as ‘mammal feeding’ and just ‘feeding’.6 the advocacy mantra, ‘breast is www.ebook3000.com

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12 towards social maternity: where’s the mother? … 299 best’ might support its direct associations with the body, even though there has at times been a regrettable disembodiment of breastmilk and breastfeeding through its separation conceptually from maternal sexual- ity, and through the focus on pumping for women at work which may have both positive and negative effects on breastfeeding rates (johnson et al. 2012; lapore 2009). whatever the choice of individuals, the variation in terminology indicates the tension between the characterisation of breastfeeding as an intimate and private act, which resists both commodification and sharing, versus its public health attributes, inscribed within the health, welfare, and food economy. breastmilk underscores the exclusive breast- feeding arrangement, whereas human milk points to its potential value beyond mothering. thus, the possibility that breastmilk (rather than human milk) might be traded contradicts the values within which contemporary breastfeed- ing is upheld, as opposed to human milk expression, pumping, dona- tion, or sale. this is because the former, more commonly used term connotes embodiment and intimacy, reinforcing the virtuous circle of the mother-infant dyad and the ideal of the good mother breastfeeding for duty rather than pleasure.7 similarly, the term ‘exclusive breastfeed- ing’ to describe breastmilk feeding without the use of infant formula or solid food until the age of six months has the benefit of sustaining the imaginary of the maternal body which feeds the child (tugwell 2013). however, an unintended consequence of the term has been to rein- force the exclusivity of the breastfeeding relationship between a nursing mother and her biological offspring. additionally, the socio-economic pressures on mothers to bear individual responsibility—sometimes without assistance—for their children’s well-being results in an exclu- sionary approach to mothering, or, at best, parenting as a couple where the partner is wholeheartedly engaged. the conflation of exclusionary and exclusive breastfeeding adds to the difficulty of conceiving of human or breast milk either as sharable, or as a commodity for exchange or sale. furthermore, the possibility that human milk might be conceived of as food is occluded by both these terms, confining it to a narrow utilitarian function within early moth- ering, and, as rebecca kukla argues, reducing it to one of the ‘signal

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300 f. giles moments’ against which adequate mothering is measured, despite its much longer presence in human lives (2008: 67). breastmilk is therefore conceived of normatively as a virtuous gift delivered duty-bound from the mother to her child, ideally for that child alone, and for a discreet period of time, as a gesture of fidelity to the exclusion of other food types, other food sources, or other motivations to breastfeed.8 in summary, the concept of exclusive breastfeeding has arisen along- side an ideal of exclusionary mothering and the medical rarefication of milk’s biochemical properties. it has coincided with the rise of neo- liberalism and the promotion of attachment parenting within relatively isolated and private circumstances. exclusive breastfeeding means not just the feeding of breastmilk exclusively, without supplementation, but also that the source of breastmilk is exclusively the biological mother’s, without help from the bodies of others (nor, at times, others’ resources or support). the biological, cisgender female mother is upheld as both the single producer and the single provider of breastmilk for her child. trevor macdonald’s story in where’s the mother? macdonald becomes pregnant to his husband and intends to use formula to feed their baby once it is born. like many transgender men, he had undergone chest surgery after a period of hormone therapy, but retained his female reproductive organs. macdonald’s chest surgery fulfilled a longstanding ambition to have his breasts surgically removed, an operation that was successful in contour- ing a more conventionally masculine chest for him, and which contrib- uted significantly to his achieving a sense of belonging in his own body. ironically, it was only after this surgery that, he writes, ‘i had new space in my soul to care for others’ (2016: 44), and he and his partner started to plan a family. while pregnant, macdonald begins researching the extensive parent- ing literature and learns that the physiology of a baby’s gut in the first six months of its life is poorly suited to formula. he therefore commits to using breastmilk. conscious ‘that even perfectly equipped cisgender women often find breastfeeding terribly difficult’, macdonald decides www.ebook3000.com

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12 towards social maternity: where’s the mother? … 301 to be ‘ultra-prepared’ and begins asking friends who are parents for advice. knowing that ‘nursing is a natural process but it is also learned through observation and sharing’ (2016: 61), he decides to attend a lll meeting. macdonald is fortunate that a close friend, simone, is a volunteer leader with the local lll group, and she agrees to introduce him to the women at the meeting. simone lends macdonald literature on breastfeeding after reduction surgery and provides other advice. she will also go on to become a primary donor as she continues to breast- feed her youngest daughter. by the time macdonald gives birth to jacob—at home, with mid- wives in attendance—he has produced a small amount of colostrum through hand-expressing; and he has discovered that with the help of an at-the-nipple supplementing tube linked to a bottle of expressed donor milk, he can feed jacob at his chest, hoping that even a brief period of breastfeeding will be beneficial. the process is painful and difficult, with macdonald only having a tiny amount of breast tissue to assist jacob’s latch; and the use of the supplemental tubing adds to the awkwardness of the process. they battle on valiantly nevertheless, with macdonald producing a small quantity of milk, but most coming from donors. so begins a breastfeeding relationship that becomes a central feature of the small family’s life. macdonald’s visit to the lll group marks the first of many risky encounters where he tentatively explains to strangers his transgen- der status and his intention to breastfeed—in this case, to a group of nursing mothers. this process of coming out, many times, in order to receive help to breastfeed his baby, or in seeking acceptance from others to do so in their presence, becomes a recurring theme of the book. one of the most interesting outcomes of what amounts to a months-long social experiment is the unanimous alacrity with which those he seeks help from are more than willing to assist. ultimately, he receives more offers than he needs, and in one or two cases he decides against a donor when it becomes apparent that her diet is compromised or that she is a smoker. throughout their quest to find sufficient donated milk to support jacob without formula supplements, macdonald and his partner inter- act with a wide cross section of breastfeeding parents, who become

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302 f. giles aware of macdonald’s need through facebook call-outs, postings on friends’ pages and advertising on the specific milk sharing site human milk four human babies.9 additionally, online parenting groups, word- of-mouth and pure good luck bring offers from would-be donors. some of jacob’s donors have caches of expressed milk they’re more than happy to clear out of their overloaded freezers, but live a distance from their hometown. in these cases, macdonald and his partner need to travel to collect the supply, or beg the bus company to remain open so the milk that’s been delivered won’t spoil overnight. at other times, parents come to them, friends of neighbours make contact, or strangers make offers through facebook. nevertheless, it seems to be a full-time job to main- tain adequate stores as jacob thrives and his appetite increases. macdonald’s and his partner’s commitment to breastmilk takes on epic proportions as they plan, scheme, and repeatedly explain their unusual circumstances, sometimes to complete strangers. macdonald writes that they gradually developed ‘something like depression men- tality’ (2016: 204), hording scraps and planning diligently, even when they have adequate stores. when jacob is around five months old, they receive some relief on meeting someone who could only be described as a ‘super-producer’. sandi produces enough milk for two-and-a- half babies and is happy to share the excess with jacob. macdonald’s deepening trust of sandi as they become friends leads them to dis- continue pasteurising her donations, as well as being able to let other donors know their milk is no longer needed, news of which the donors responded to ‘with some note of relief’ (2016: 204). while no one had indicated to macdonald their stress in maintaining supply for them- selves along with donations for jacob, it becomes clear they had com- mitted extra energy and time in order to help—and were relieved to find they were no longer needed. the exchange of milk becomes the basis, on many occasions, for the beginning of a friendship. as macdonald writes, ‘whenever possible, i try to spend time with milk donors face-to-face, especially if donations will be ongoing’ (2016: 220). as he becomes increasingly knowledge- able about breastmilk expression, maximising supply, safe storage, han- dling, and shipping, he also becomes a source of advice and reassurance to other parents, ultimately becoming a lll volunteer.10 www.ebook3000.com

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12 towards social maternity: where’s the mother? … 303 the socio-economic, ethnic, and religious background of jacob’s donors is surprisingly diverse, causing macdonald to reconsider some of his assumptions about heterosexual men from other socio-economic backgrounds he would quite likely never have chanced to meet. the gradually emerging mutuality of these relationships speaks to the ele- ment of benevolence that results from sharing. for some, the donations might be motivated by a sense of duty, but most donors were keen to share what they regard as a precious resource that would otherwise go to waste, and were keen to assist because the experience was rewarding in itself, as well as extending their social network and building capacity for exchanges of other kinds within their community. on one notable occasion, macdonald’s partner arranges to meet a father in a car park at night to deliver his wife’s supply. macdonald wonders how this might look to a police patrol, should it be passing: a burley male with ‘abundant tattoos’ unloading the boot of his car. ‘ian imagined cops arriving right then. the police would take one look at byron in his muscle shirt, the two parties meeting late at night in an empty lot, the transfer of product, and they’d all get hauled down-town. it’s only breastmilk, i swear!’ (2016: 220). as an exotic substance, this is not such a fanciful fear: breastmilk has been subject to legal scrutiny, from nursing mothers with addiction problems or who have a crimi- nal record for drug taking, to divorcing mothers seeking to retain full custody until weaning, or mothers continuing to breastfeed their child beyond a socially acceptable age, to instances when mothers have been detained by security at airports for having bottled expressed milk in their hand luggage.11 in relation to byron and his partner katrina, macdonald and his partner are initially concerned they will not find macdonald’s transgen- der parenting acceptable, but they end up offering byron and katrina a room in their house to stay overnight, in effect exchanging hospi- tality for milk. strikingly, only one encounter with a stranger while breastfeeding in public results in abuse. yet even on this occasion, macdonald also receives reassurance, from a man who had witnessed the harassment (2016: 192).

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304 f. giles macdonald and his partner went to unusual lengths to ensure a con- tinuous supply of donor milk across the first nine months of jacob’s life, when he began to accept solids. it is a story of resounding success, not only for macdonald’s use of an at-the-breast supplementer when a transgender man (or anyone) has only a small amount of breast tissue, but also for the viability of a nine-month period of sustained breastmilk donation—from friends, neighbours, and strangers, and via the internet or through word-of-mouth. not only were women, often with the help of their partners, donating their breastmilk, with its attendant commit- ment of time, effort, hygienic expression, storage, and shipping pro- cesses; they were also in some cases happy to donate their breasts and to cross-nurse, as tara does one night when out with macdonald and jacob, saying ‘my boobs are your boobs!’ (2016: 167). the relationships made possible by macdonald and his partner’s quest are uniquely close and enduring. towards social maternity the bioethical underpinnings of macdonald’s experience closely echo the findings of karleen gribble’s research, where the typical answer to the question ‘why do women donate?’ is ‘i’m happy to be able to help’ (2014: 251). other research shows that women have pumped to build their supply, only to find they produce an amount sufficient for their baby, and are then keen to share the excess, stating their hope that mutuality might result, and that others might do the same for them, if needed (azema and callahan 2013). unpaid wet-nursing, cross- nursing, or breast-sharing has also been shown to free mothers for other activities, just as babysitting does at a later age or for formula fed babies using bottles. here, reciprocity and consent are key to a successful and ethical exchange (giles 2003; gribble 2014; shaw 2010). in macdonald’s case, the wider net cast in his search for donors expanded his social network, much along the lines advocated by robert putnam in his classic study, bowling alone: the collapse and revival of american community, which describes the increasing social isolation of individuals in contemporary us culture (2000). putnam’s advice is to www.ebook3000.com

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12 towards social maternity: where’s the mother? … 305 restore social capital by building ‘bridging networks’; that is, by people reaching beyond their familial, professional, or socio-economic group- ings, in order to create a ‘generalized reciprocity’ (2000: 21). it is pre- cisely this ‘bridging network’ that macdonald’s and his partner’s quest for breastmilk achieves. as rhonda shaw has argued, cross-nursing also provides this opportunity for building reciprocity and for extending ‘the boundaries of social maternity’ (2004: 288). macdonald’s situation illustrates how the separation of gender and mothering leads to a separa- tion of breastfeeding and breastmilk, added to the consequent involve- ment of partners and acquaintances in feeding jacob, which produces a form of ‘social maternity’ at its best. the emotional investment of others in macdonald’s project suggests a widely held desire to engage in caring activities, to form relationships and to build a sense of community. additionally, as the quote from gribble’s study shows, happiness and helping coincide. this has been confirmed by studies showing a correlation between well-being and vol- unteering, as well as social interaction more generally (morrow-howell 2003; thoits and hewitt 2001). as gribble found: more than a quarter of women who had initially engaged in milk sharing by donating their surplus expressed breastmilk continued to express milk specifically for donation. respondents stated that it was the circumstances of the recipient and knowing her and her child that motivated them to continue… the specific knowledge of the need for milk can make addi- tional expressed breastmilk available. (2014: 254 [italics added]) this indicates that a relationship is often formed as a result of milk sharing, and knowledge of the parent or parents and baby encour- ages the donor to continue helping. as macdonald discovered, some donors are motivated to assist beyond the point of their own conveni- ence. several had suffered from health problems, and one donor, tara, still experienced physical disabilities as a result of a previous illness. it is perhaps because of this that tara is particularly open to what julie robert has termed ‘embodied philanthropy’ (2013: 262).12 robert coined this term to describe fund-raising efforts, through for example, women shaping their pubic hair to raise awareness of cervical cancer for

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306 f. giles canada’s ‘julyna’ campaign, or men growing a moustache for australia’s ‘movember’ prostate cancer awareness campaign. although robert cri- tiques campaigns of this kind for potentially reinforcing ‘hyper-individ- ualistic’, self-fashioning opportunities for identity building, she also sees their potential for more altruistically motivated, pro-social behaviour. donating breastmilk to others provides a good example of embodied philanthropy that brings pleasure and benefits to both donor and recipi- ent. drawing from research by ferguson, farrell, and lawrence into blood donors’ ‘feel good’ response, gribble agrees that this amounts to a shift from altruism to benevolence, since a reward beyond the satisfac- tions of duty is received in return for the donation (2014: 254). robert concludes that, ‘the modification and play with and on the body and its surfaces accordingly arises as a driving force in this emerging kind of philanthropy’ (2013: 272). the campaigns robert uses in her case study illustrate willingness to contribute physical and psychological resources, rather than just money, echoing the more traditional voluntarism that putnam argues is in decline. the concept of embodied philanthropy also allows for physical engagement that is health enhancing or empow- ering (such as the alcohol abstinence campaign, ‘dry july’). ironically, the promotion of exclusive breastfeeding has fuelled the motivations of mothers to pump or hand-express additional milk, either to build their supply or as back-up in case of separation or illness down the track, or to enable a partner to feed their baby (gribble 2014: 253). it has also resulted in knowledge of other pleasures of the body atten- dant on breastfeeding, separate from babies or bonding, and purely for the benefit of the mother. as one of macdonald’s donors, linda, explains, ‘i like pumping, you know, to see how much i can get. it’s fun’ (2016: 243). like other physical achievements—whether athletic or aes- thetic—successful lactation, and making visible its results, can contrib- ute to a sense of accomplishment and power. gift-giving milk also provides safeguards, since the parties are more likely to have communicated directly if not having met in person, and there is no incentive for a provider to maximise profit by diluting the milk or handling it without due care. direct personal contact builds a reputational disincentive to cause harm. additionally, as macdonald found, donors were open about their lifestyle and diet, and about their www.ebook3000.com

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12 towards social maternity: where’s the mother? … 307 reasons for donating, and were far from insistent in his taking their milk if he was in doubt. in almost every case, macdonald pasteurised the milk before feeding jacob. personal donation, then, might minimise the harm of informal milk sharing. if guidelines were sufficient to establish informed consent, this would be preferable to the sale of milk outside the milk banking sector, which can provide its own rigorous screening and management. this is not dissimilar to fentiman’s proposal for ‘a regulated market that would exist alongside the current donative market’ (2012: 176). at the same time, by acknowledging that informal milk sharing exists, health profes- sionals could feel free to provide information to safeguard the practice (gribble 2014a). lissa skitolsky argues that the combination of the widespread knowledge of breastmilk’s value, together with the sometimes insur- mountable difficulties for some women to successfully breastfeed to six months or beyond—while working, for example, or due to health problems—means that ‘we need to conceptually separate the transmis- sion of breast milk from the act of breastfeeding’ (2012: 77). skitolsky argues that a key deficiency of the breastfeeding advocacy movement has been this conflation of breastfeeding with breastmilk, which insists that the mother producing the milk and providing it via her breast, or as expressed milk, is the only normative option. she writes that, ‘i regard breastfeeding as one kind of delivery system for breast milk and, in agreement with biomedical discourses, view this milk as a precious commodity to which all should have access’ (2012: 67). not only do we have a moral responsibility to assist mothers who experience pain and other difficulties while nursing, and to provide par- ents with alternative means to supply breastmilk to their children, but women’s labour and bodily products ought also to be valued equally with the other bodily tissues that have been monetised (swanson 2014, carroll 2015). these need not be mutually exclusive objectives. as kara swanson argues in her ground-breaking history, banking on the body (2014), moving away from the ‘gift/commodity dichotomy’ would ena- ble us to recognize both the benevolence and the economic benefit of sharing or exchanging bodily tissues (2014: 9). that the economic value of breastmilk can be counted as part of the gdp while simultaneously

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308 f. giles being conceived of as a gift testifies to the co-extensiveness of these attributes. to openly recognise human milk as ‘“civic property” … span- ning the theoretical divide between private and public… based on the public good’, would provide women with real compensation for their milk, while allowing for a regulatory framework to safeguard its qual- ity (swanson 2014: 13). this would be similar to michele goodwin’s recommendation to enable altruistic donation based on a ‘relational framework’ within what she terms ‘intimate markets’ to coexist with a state-regulated, paying market (2009: 837). institutionally controlled‚ screened milk could still be distributed to those most in need, while informal sharing could be the preserve of parents with healthy babies, or other children and adults. remuneration has been provided historically to the ‘bodily product seller’ for sperm and blood, and was provided for milk until the great depression (swanson 2014: 197). skitolsky describes the dilemma that breastfeeding advocacy has resulted in, with breastmilk elevated to the gold standard but its supply strictly confined to heteronormative families who find exclusive breast- feeding easy to achieve. that is, ‘either mothers breastfeed their own children or those children are unduly deprived of breast milk and all of its benefits’ (2012: 65). skitolsky argues that because breastfeeding for some women is extremely painful, at least when becoming estab- lished, access to an alternative breastmilk supply would enable mothers to resume breastfeeding once they’ve recovered (as long as they main- tain their supply during the first six weeks through pumping). because mothers are culturally primed to accept sacrifice and suffering in the course of motherwork, she notes that ‘often, maternal pain is viewed as a necessary sacrifice rather than a problem of what emmanuel levinas would call “useless suffering”’ (2012: 64). ‘this effacement [of suffer- ing] is reinforced by the normalisation of women’s suffering as a “natu- ral” part of pregnancy, birth, breastfeeding, and mothering, rather than a serious problem for women’s emotional and physical health. it is time we regard women’s suffering in the course of breastfeeding as useless, as a moral objection, which for levinas is “unpardonable and solicits me and calls me”’ (2012: 65). the opening out of uses for donated milk, such as to bridge gaps when mothers are ill or establishing their supply, www.ebook3000.com

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12 towards social maternity: where’s the mother? … 309 further exemplifies the value of adopting shaw’s concept of social maternity. because the formal milk banking network is focused on providing milk for premature or very sick infants in hospitals, and the supply even for this use is insufficient, parents have been turning to the informal networks provided by social media, or through friendship groups to fill the gap. providing a real monetary incentive for women to donate to the banks could reduce the online sales, which are impossible to regu- late, while still accommodating unpaid, informal sharing within com- munities. as skitolsky writes: ‘because milk sharing is a new, radical maternal practice, we need to adjust our social and economic practices to allow room for it to develop in a safe and healthy way’ (2012: 76). in doing so, we should recognise that the labour of the maternal body need not be occluded in order to acknowledge its benevolence. conclusion: in support of inclusive breastfeeding in this chapter i support an argument for a hybrid system, within which governments regulate the market for the remuneration of women who supply their milk to hospital-based milk banks or pharmaceutical companies, and provide guidelines to maximise the safety for individ- uals informally buying and selling human milk online. ideally, remu- neration from milk banks would encourage women to sell their milk through the regulated system, reducing informal sales, while leaving the less risky process of informal, unremunerated peer-to-peer sharing as an option within communities. as goodwin notes, the existence of infor- mal exchange relationships in organ donation indicates ‘that choice and relationships matter in human biological exchange’ (2009: 804), clearly illustrated by macdonald’s experience. the lack of financial incentive, together with the relationship-build- ing potential of informal sharing, is also more likely to result in the safe handling of milk. its recognition more broadly would encourage breast- feeding advocacy groups and health professionals to provide guidelines

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310 f. giles for safe practice and informed consent. at the same time, the pricing of milk within the regulated market, whose primary consumers are parents of premature or sick infants, ‘may even convey the social value of breast- milk’ more generally (shaw 2010: 92), resulting in increased socio-eco- nomic support for breastfeeding mothers. the large profits made by prolacta and medolac, and potentially other businesses as more emerge, as well as the moral imperative to rec- ognise the labour of women and the contribution of their milk to the gdp, makes it clear that it is unjust not to remunerate women who supply milk to people outside their immediate family. as bromberg bar yam notes, it is ‘untenable’ that ‘non-profit milk banks cannot pay donors [while] for profit companies must pay donors’ (2010: 108). at the same time, the rise of the sharing economy and the dissemination of safe methods to express, store, and distribute human milk within com- munities means that a culture of milk sharing is also viable, and may be the preference of a significant population of women with milk to spare.13 as those who donated to macdonald made clear, sharing is an important source of social capital building, in addition to helping oth- ers, reducing waste, and providing the pleasure of making the most of the lactating period of parents’ lives beyond feeding their own children. for macdonald, the quest for the ideal of ‘exclusive breastfeed- ing’ became a rewarding and more realistic experience that might bet- ter be understood as ‘inclusive breastfeeding’, to borrow a term from aran tavakoli’s mothering blog, ‘sanity spot’. faced with the choice described by skitolsky, between her own breastmilk and infant formula, tavakoli writes that although ‘i do exclusively give my baby all the breast milk i have … i wish there was a different word for how i feed my baby. a word that matches the pride of the mamas who do exclu- sively breastfeed their little ones all they produce’. noting that the term exclusive means ‘not shared’, she opts for inclusive instead, since ‘saying that “i inclusively breastfeed” is so much more positive and empower- ing than saying, “i have low supply and need to supplement.” my lacta- tion consultant, ashley, always said to me, “he is getting your milk…” he’s getting my milk, the amount doesn’t matter, and he is getting my milk’. inclusive breastfeeding, she continues, means ‘open to everyone: not limited to certain people’ (tavakoli 2014). www.ebook3000.com

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12 towards social maternity: where’s the mother? … 311 as with macdonald’s experience, and those of other parents online, the choice has shifted from one between the biological parent’s breast- milk and the use of formula, to a consideration of trusted alternative sources of breastmilk. in turn, this broadens our understanding of what constitutes a ‘maternal body’, which recognises everyone’s responsibil- ity to feed others. as robyn lee states, the de-gendering of the person who ‘feeds’ others in levinas’ sense means that all humans can be con- structed as ‘being like a maternal body’ (2016: 262). from caravaggio’s seven acts of mercy (1607) to steinbeck’s grapes of wrath (1939), a woman who breastfeeds another in crisis illustrates how the basis for human morality lies in embodied care (hamington 2004). likewise, all of us can play a part in assisting parents to obtain optimal nutrition for their families. it has been an accident of history that the promotion of ‘exclusive breastfeeding’ and its meaning ‘to feed only breastmilk’ has gained wide- spread legitimacy at the same time that ‘exclusionary mothering’ has also become a normative practice, with the promotion of attachment parenting under neo-liberalism. to adjust the terms to ‘inclusive breast- feeding’, ‘inclusive mothering’ and ‘social maternity’ offers an alterna- tive conceptualisation, where the biological parent’s breastmilk is still the most desirable form of nutrition for babies, and breastfeeding the most desirable way to provide it, but donor milk, whether paid for or donated, and breast-sharing with informed consent, can be supported as next best options. notes 1. i will be using the terms human milk and breastmilk interchangeably, depending on the context, and will also refer to both breastfeeding and chestfeeding. 2. catharina svanborg’s research into the use of human alpha lactalbu- min made lethal to tumour cells (hamlet), derived from breastmilk for cancer treatment has also resulted in the formation of the company hamlet pharma in lund, sweden. for more information, see http:// hamletpharma.com/en/ (accessed 5 september 2016).

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312 f. giles 3. financial information for private companies is not available, however prolacta has raised us$46 million in investment since it was founded and medolac has an estimated annual revenue of us$10 million. 4. for more information about the exploitation of wet nurses, including the transference of syphilis from babies to wet nurses in nineteenth- century france, see joan sherwood, infection of the innocents (2010). 5. for a history of the antecedents of attachment parenting, see sharon hays’ work on ‘intensive mothering’ in her book, the cultural contradictions of mothering (1996). 6. see trevor macdonald et al. (2016: 2); and jessi hempel, ‘my broth- er’s pregnancy and the making of a new american family,’ time, 1 september 2016 http://time.com/4475634/trans-man-pregnancy-evan/ (accessed 3 september 2016). 7. breastfeeding is also regarded as an altruistic element of mothering since advocacy (and the christian heritage, if not other religious tra- ditions) promotes breastfeeding as a duty, and symbol of the good mother. although breastfeeding (as opposed to human milk via other means) is increasingly understood to have mutual physical and psy- cho-social benefits, and its pleasures are being relearned, promotion of breastfeeding still rests on its scientific benefits, and by extension, the moral imperative of a mother to maximise the health of her offspring. 8. it is beyond the scope of this essay to develop the conceptualisation of human or breastmilk as a food, and the ways this attribute has been occluded in both advocacy and scientific discourse. nevertheless, the ‘foodiness’ of human milk has been explored by both chefs and artists and provides potential for an approach to the valuation of breastfeeding as environmentally sustainable, if not part of the slow food movement (see also nicola perullo taste as experience 2016). 9. initially established as eats on feets in 2010 by shell walker and maria armstrong following an idea to help people share milk in 1991, an offshoot known as human milk 4 human babies has become the bet- ter known of the two sharing websites, among others which have since been established worldwide. 10. this required lobbying lll organisers who were uncertain whether a man would be a suitable advisor. for the full story, see http:// www.huffingtonpost.com/trevor-macdonald/how-i-learned-to-be-a- bre_b_1452392.html (accessed 3 september 2016). 11. following extensive media coverage of incidents involving expressed breastmilk, us airports now permit larger quantities than 100 ml to www.ebook3000.com

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12 towards social maternity: where’s the mother? … 313 be carried onboard to feed babies. however, in april 2016 security at heathrow forbade a mother with several gallons of frozen milk to take it onboard or check it in as luggage, forcing her to discard it. see http:// www.dailymail.co.uk/news/article-3555253/mother-forced-dump- four-gallons-breast-milk-trying-security-heathrow-airport.html (accessed 19 september 2016). 12. this concept has also been referred to as ‘civic fitness’ within the con- text of ‘commodity activism’. see samantha king (2012). 13. strict milk banking policies also reduce the amount of milk eligible for donation, since they require a minimum supply, as well as maximum age of the donor’s baby, among other constraints. this means parents who do not meet these requirements have safe milk to share informally, as trevor macdonald discovered. references allen, d., & berg, c. (2014). the sharing economy. institute of public affairs. retrieved september 23, 2016, from https://ipa.org.au/portal/uploads/ sharing_economy_december_2014.pdf. azema, e., & callahan, s. (2013). breastmilk donors in france: a portrait of the typical donor and the utility of milk banking in the french breastfeed- ing context. journal of human lactation, 19, 199–202. baker, j. (2014). neoliberalism and the depoliticizing of motherhood: the australian experience. in m. vandenbeld giles (ed.), mothering in the age of neoliberalism (pp. 169–184). toronto: demeter press. bindley, k. (2011). breast milk bank shortages prompt concern. huffington post. retrieved september 12, 2016, from http://www.huffingtonpost.com. au/entry/breast-milk-bank-shortage_n_1093648. block, j. (2010). move over, milk banks: facebook and milk sharing. time magazine. retrieved august 18, 2016, from http://content.time.com/time/ health/article/0,8599,2032363,00.html. blum, l. m. (2000). at the breast: ideologies of breastfeeding and motherhood in the united states. boston: beacon press. bowlby, j. (1953). childcare and the growth of love. london: penguin. bromberg bar yam, n. (2010). the story of the mother’s milk bank of new england. in r. m. shaw & a. bartlett (eds.). giving breastmilk: body ethics

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314 f. giles and contemporary breastfeeding practice (pp. 98–109). toronto: demeter press. bueskens, p. (2015). breastfeeding in public: a personal and political mem- oir. in l. taith, j. jones, & m. porter (eds). mothers at the margins: stories of challenge, resistance and love (pp. 225–244). newcastle upon tyne: cambridge scholars. bye, c. (2016). mums desperate for breast milk turn to internet due to short- age of recommended milk banks. retrieved september 12, 2016, from http://www.dailytelegraph.com.au/news/nsw/mums-desperate-for-breast- milk-turn-to-internet-due-to-shortage-of-recommended-milk-banks/news- story/06fa7eb53468fd361c84410382c43d2e. carroll, k. (2015). milk money: should donating mothers be compensated for their milk? australian review of public affairs. retrieved august 20, 2016, from http://apo.org.au/resource/milk-money-should-donating-mothers-be- compensated-their-milk. dutton, j. (2011). liquid gold: the booming market for human breast milk. wired magazine. retrieved september 12, 2016, from https://www.wired. com/2011/05/ff_milk/. fentiman, l. (2012). marketing mother’s milk: the markets for human milk and infant formula. in p. hall smith, b. hausman, & m. labbok (eds.), beyond health, beyond choice: breastfeeding constraints and realities (pp. 169– 179). new jersey: rutgers university press. ferguson, e., farrell, k., & lawrence, c. (2008). blood donation is an act of benevolence rather than altruism. health psychology, 27(3), 266–327. giles, f. (2003). fresh milk: the secret life of breasts. new york: simon and shuster. golden, j. (2001). a social history of wet nursing in america: from breast to bot- tle. columbus: ohio state university press. goodwin, m. (2009). relational markets in intimate goods. legal studies research paper series. minneapolis: university of minnesota law school, research paper no. 10–52: 803–838. gribble, k. d. (2014a). ‘i’m happy to be able to help:’ why women donate to a peer via internet-based milk sharing networks’. breastfeeding medicine, 9(5), 251–256. gribble, k. d. (2014b). the perception and management of risk in internet based peer-to-peer milk sharing. early child development and care, 184(1), 84–98. www.ebook3000.com

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12 towards social maternity: where’s the mother? … 315 gribble, k. d., & hausman, b. (2012). milk sharing and formula feed- ing: infant feeding risks in comparative perspective. australasian medical journal, 59(5), 275–283. hamington, m. (2004). embodied care: jane addams, maurice merleau-ponty, and feminist ethics. urbana: university of illinois press. harrison, l. (2016). brown bodies, white babies: the politics of cross-racial sur- rogacy. new york: new york university press. hastings, g. (2013). social marketing: from tunes to symphonies. london: routledge. hausman, b. (2003). mother’s milk: breastfeeding controversies in american cul- ture. new york: routledge. hausman, b. (2011). viral mothers: breastfeeding in the age of hiv/aids. ann arbor: university of michigan press. hays, s. (1996). the cultural contradictions of mothering. new haven: yale university press. jackson, d. b. (2016). the association between breastfeeding duration and attachment: a genetically informed analysis. breastfeeding medicine, 11(6), 297–304. johnson, s., leeming, d., little, s., & williamson, i. (2012). empowerment or regulation? women’s perspectives on expressing milk. in p. hall smith, b. hausman, & m. labbok (eds.), beyond health, beyond choice: breastfeeding constraints and realities (pp. 180–189). new jersey: rutgers university press. karasin, e. (2016). mother is forced to dump four gallons of breast milk after trying to take it through security at heathrow airport. daily mail. retrieved september 19, 2016, from http://www.dailymail.co.uk/news/arti- cle-3555253/mother-forced-dump-four-gallons-breast-milk-trying- security-heathrow-airport.html. king, s. (2012). civic fitness: the body politics of commodity activism. in s. banet-weiser & r. mukherjee (eds.), commodity activism: cultural resist- ance in neoliberal times (pp. 199–218). new york: new york university press. kukla, r. (2008). measuring mothering. international journal of feminist approaches to bioethics, 1(1), 67–90. lapore, j. (2009). baby food: if breast is best why are women bottling their milk. new yorker. retrieved september 13, 2016, from http://www.newyor- ker.com/magazine/2009/01/19/baby-food.

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316 f. giles lee, r. (2016). feeding the hungry other: levinas, breastfeeding and the poli- tics of hunger. hypatia, 31(2), 259–274. macdonald, t. (2016). where’s the mother? stories of a transgender dad. dugald, manitoba: trans canada press. macdonald, t., noel-weiss, j., west, d., walks, m., biener, m., kibbe, a., et al. (2016). ‘transmasculine individuals’ experiences with lactation, chestfeeding and gender identity: a qualitative study. bmc pregnancy and childbirth, 16(106), 2–17. manne, a. (2005). motherhood: how should we care for our children? sydney: allen and unwin. morrow-howell, n. (2003). the effects of volunteering on the wellbeing of older adults. journal of gerontology, 58(3), s137–s145. perullo, n. (2016). taste as experience: the philosophy and aesthetics of food. new york: columbia university press. putnam, r. d. (2000). bowling alone: the collapse and revival of american com- munity. new york: simon and shuster. prolacta bioscience. (2013). tiny treasures milk bank frequently asked ques- tions. retrieved october 27, 2016, from http://tinytreasuresmilkbank.com/ faqs. robert, j. (2013). individualistic philanthropy: the paradox of embodied par- ticipation for health-related fund-raising campaigns. international journal of nonprofit and voluntary sector marketing, 18, 261–274. sears, w., & sears, m. (2001). the attachment parenting book: a commonsense guide to understanding and nurturing your baby. new york: little, brown. sennett, r. (2006). the culture of the new capitalism. new haven, ct: yale university press. shaw, r. (2004). the virtues of cross-nursing and the ‘yuk factor’. australian feminist studies, 19(45), 287–299. shaw, r. (2010). perspectives on ethics and human milk banking. in r. shaw & a. bartlett (eds.), giving breastmilk: body ethics and contemporary breast- feeding practice (pp. 83–97). toronto: demeter. shaw, r. m., & morgan, m. (2017). bio-intimate economies of breastmilk exchange: peer milk sharing and breastmilk donation in the nicu. in r. m. shaw (ed.). bioethics beyond altruism: donating and transforming biologi- cal materials. basingstoke: palgrave macmillan. sherwood, j. (2010). infection of the innocents: wet nurses, infants and syphilis in france. montreal: mcgill-queens university press. www.ebook3000.com

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12 towards social maternity: where’s the mother? … 317 skitolsky, l. (2012). tales of the tit: the moral and political implications of useless lactational suffering. in s. lintott & m. sander-staudt (eds.), philosophical inquiries into pregnancy, childbirth and mothering: maternal subjects (pp. 64–78). london: routledge. smith, j. (2013). lost milk? counting the economic value: counting the eco- nomic value of breastmilk in gross domestic product. journal of human lactation xx: 10, 1–10. smith, j., & ingham, l. h. (2005). ‘mothers’ milk and measures of economic output. feminist economics, 11(1), 41–62. stephens, j. (2012). confronting postmaternal thinking: feminism, memory and care. new york: columbia university press. stephens, j. (2015). reconfiguring care and family in the era of the “out- sourced self”. journal of family studies, 21(3), 208–217. swanson, k. (2014). banking on the body: the market in blood, milk, and sperm in modern america. cambridge, ma: harvard university press. tavakoli, a. (2014). defining my breastfeeding experience: inclusive breast- feeding. retrieved september 13, 2016, from http://www.sdbfc.com/ blog/2014/6/2/defining-my-breastfeeding-experience-inclusive-breastfeed- ing.html. tawla, s. (2013). milk sharing, milk handling, and ‘contamination’ of breast- milk, australian breastfeeding association. retrieved october 28, 2016, from https://www.breastfeeding.asn.au/milk-sharing-milk-handling-and- ‘contamination’-breastmilk. thoits, p. a., & hewitt, l. n. (2001). volunteer work and well-being. journal of health and social behaviour, 42(2), 115–131. tugwell, s. (2013). imagining the unimaginable: theorising maternal subjectivity through the representation of breastfeeding. unpublished masters dissertation, birkbeck, university of london. waring, m. (1988). counting for nothing: what men value and what women are worth. wellington, new zealand: allen & unwin. wolf, j. h. (1999). ‘mercenary hirelings’ or a ‘great blessing’? doctors’ and mothers’ conflicted perceptions of wet nurses and the ramifications for infant feeding in chicago, 1871–1961. journal of social history, 33(1), 97–120.

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318 f. giles author biography fiona giles is a senior lecturer in the department of media and communications at the university of sydney. she has been researching and publishing in the area of breastfeeding studies for over 20 years and is the author of fresh milk: the secret life of breasts (2003), as well as numerous scholarly articles on the experiential and cultural meanings of breastfeeding. she is currently working on a book-length study about the everyday aesthetics of breastfeeding and is writing a piece on ‘brelfies’ as another means towards making breastfeeding—and maternity—social. www.ebook3000.com

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13 bio-intimate economies of breastmilk exchange: peer-milk sharing and donor breastmilk in the nicu rhonda m. shaw and maggie morgan introduction breastmilk is often accorded deep religious significance, sitting high on the symbolic hierarchy of bodily fluids for its cleansing, healing, and life- giving properties. in christian iconography, for example, the image of baby jesus suckling at his mother’s breast is read as a metaphor for spir- itual sustenance from the church (bartlett 2005). yet breastmilk’s status as ‘liquid gold’ is not absolute. because bodily fluids are deeply connected to the social body and the body politic, they can have both negative and positive implications. in the donative context, breastmilk is viewed as both a cure and a poison. although breastmilk has immunological benefits for the vulnerable, sick, and ailing, discussions about its curative capacity r.m. shaw (*) victoria university of wellington, wellington, new zealand e-mail: rhonda.shaw@vuw.ac.nz m. morgan wellington regional hospital, wellington, new zealand © the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4_13 319

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320 r.m. shaw and m. morgan are often waylaid by moral panic around the exteriorisation of bodily fluids and the sharing of such fluids with unknown or non-related oth- ers. moreover, as breastmilk flows from female apertures and body parts identified as sexual, psycho-social anxiety about sharing breastmilk is com- pounded by moral evaluations of women’s bodies and the perceived prop- erties of the breastmilk of particular mothers.1 breastmilk and lactation are often associated with abject bodily zones. the movement of breastmilk from the inside to the outside of the body challenges social norms that are integral to western thinking about our physiological separation from the bodies of others. in this regard, bodily fluids such as breastmilk may evoke feelings of abjec- tion because they remind us of the body’s fundamental instability. the cultural aversion to breastmilk is amplified when it is interpreted as a ‘viral fluid’ or ‘vector of disease’ (hausman 2003, 2011), resulting in the public regulation and vigilant micro-management of bodily fluids. this is particularly the case where breastmilk flows beyond the normative direction of the biological mother-child dyad. this chapter examines how competing discourses position donated breastmilk as both a cure, in terms of its life-giving properties, and a potential poison when construed as a contaminant. first, we discuss the phenomenon of peer-to-peer breastmilk sharing over the internet (here- after, peer-milk sharing) and public health protestations about the risks associated with this burgeoning practice. we then document the trans- mission and social management of donated breastmilk in the context of a new zealand neonatal intensive care unit (nicu), where donor breastmilk occupies an ambiguous place due to the non-availability of pasteurised donor milk banking facilities. we suggest that the value attributed to breastmilk as a biological substance and bodily product depends on its classification as either suspect or precious, the way it is shared, and the actors involved throughout the course of its exchange. in this chapter, we discuss accounts of online peer-milk sharing in the literature, alongside observational research that documents the views of healthcare professionals, donors, and recipients in a nicu at wellington hospital in new zealand. the empirical data from the nicu, for which informal consent has been given, outline the ethical and safety issues involved during the distribution and exchange of donated breastmilk in the www.ebook3000.com

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13 bio-intimate economies of breastmilk … 321 nicu, as it shifts from a bodily fluid to a food and medicinal substance.2 in particular, we address the discursive tension between advocates who pro- mote peer-milk sharing and breastmilk donation in the nicu as benefi- cent, and detractors who seek to regulate these practices more stringently. following charlotte kroløkke and michael nebeling petersen (2017), we posit that the donor–recipient relation typical of peer-milk sharing and breastmilk donation in the nicu supports a bio-intimate economy of care, which constructs donors as particular kinds of ethical subjects. by producing bodily resources for others to consume, breastmilk donors tell us something about their moral character; they are altruistic, caring, and responsible individuals who use the generative aspect of their bodies as a means through which to enact good deeds. at the same time, donors’ dis- plays of morality and maternal responsibility, like infant feeding decisions generally, are linked to contemporary neoliberal discourses around risk management and lifestyle choice (murphy 1999, 2000; stearns 1999). the benefits of breastmilk in 1991, the who/unicef baby friendly hospital initiative (bfhi) was launched to address decreasing global rates of breastfeeding. since that time, exclusive breastfeeding has been recommended for infants for the first six months of life, and for two years thereafter, along with complementary food. the new zealand government endorsed the bfhi initiative in 2000, and all tertiary maternity facilities and nicus are now bfhi accredited. step 6 of the bfhi 10 steps to successful breastfeeding, which is relevant for this discussion, states, ‘give new- born infants no food or drink other than breastmilk, unless medically indicated’ (who/unicef 1989). organisations such as the who (2003), the american academy of pediatrics (2012), and the new zealand ministry of health all advocate breastfeeding as the optimal form of infant feeding. aside from stating reservations about the ben- efits of breastmilk substitutes and artificial baby milk, the who and the american academy of pediatrics recommend the use of donor breastmilk as the first alternative if a mother’s own milk is unavailable. additionally, sect. 2.2. of the new zealand ministry of health’s health

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322 r.m. shaw and m. morgan code of practice states, ‘if the mother is unable to establish breastfeed- ing, an appropriate infant formula should be provided for the baby or donor milk if available and acceptable to the mother. if used, donor milk must meet the required standards for safe collection and storage.’ for health reasons, breastmilk from the baby’s mother is deemed par- ticularly important as a first choice option for premature infants, not only as a source of nutrition but also due to bioactive factors. scientific studies indicate that hormones, growth factors, enzymes, immunoglob- ulins, lactoferrin, oligosaccharides, nucleotides, antioxidants, and other components of breastmilk protect an infant from infection, and provide optimal intestinal bacterial flora for the infant’s future immune health (faraghi and schanler 2013; heiman and schanler 2006; hair et al. 2016). for premature infants, breastmilk offers protection from a con- dition known as necrotising enterocolitis (nec) (sullivan et al. 2010), late onset sepsis and reduced rates of bronchopulmonary dysplasia, and severe retinopathy of prematurity (hair et al. 2016). breastmilk also assists gastrointestinal development and immunity to some infections and helps develop the infant’s immune system. in the last two decades, research looking into the human microbiome and the breastmilk biome in particular has hypothesised that this primes the newborn gut for future immune health (rautava 2016). additional research shows that feeding tolerance is improved, and attainment of full enteral feeding is developed more quickly, in preterm infants on a full human milk diet (american academy of pediatrics 2012; schanler 2001). breastmilk is also said to be beneficial for clinical conditions such as food allergies, food intolerance, immune deficiencies, renal dis- ease, post-surgical recovery from metabolic diseases, improved neuro- developmental outcomes, and shortened length of hospital stay for babies in the nicu (heiman and schanler 2006; faraghi, ahrabi and schanler 2013; vohr et al. 2006; hair et al. 2016). there is evidence indicating that women and healthcare profession- als may support breastmilk donation more readily than other forms of breastmilk sharing such as cross-nursing or wet-nursing (long 2003; shaw 2007), both of which involve body-to-body contact. some stud- ies also indicate that perceptions of human milk donation as a risky or ambivalent practice are no less prevalent than criticisms of breastmilk www.ebook3000.com

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13 bio-intimate economies of breastmilk … 323 exchange involving co-presence and physical proximity. katherine carroll’s (2016) research with 19 american nicu mothers, for exam- ple, shows how the sharing of bio-substances like donated breastmilk from a third party can challenge women’s perceptions of the mother- infant bond as exclusive, as well as ideas around kinship and relatedness. peer-milk sharing increasingly, due to breastfeeding campaigns around the world pro- moting the message that ‘breast is best’, women who cannot or do not breastfeed their own infants are turning to donor breastmilk as an infant feeding option. this has been further facilitated by the rise of online peer-milk sharing. to date, there are 170 facebook groups facilitat- ing peer-milk sharing in over 50 countries, with tens of thousands of women worldwide using the internet to source breastmilk (gribble 2013, 2014a). in new zealand alone, it is estimated that there are around 8000 women seeking donors and women donating breastmilk online (sunday: milk sisters 2016). breast-sharing, in the form of cross- nursing, is ordinarily a private act and is frequently arranged between women who are known to one another. however, with the advent of increasing internet use and online forums, facebook and websites, breastmilk sharing has gone public. in 2010, peer-milk sharing received impetus with the creation of the facebook pages eats on feets (called piripoho aotearoa in new zealand) and human milk 4 human babies. these sites provide a means to source breastmilk for women who are unable to breastfeed, have an insufficient milk supply, have sick or pre- mature infants, or are concerned about the use of infant formulas, and in some cases, do not wish to breastfeed. the recent emergence of issues such as melamine or bacterial contamination and threats of formula milk tampering have likewise led to upsurges in the demand for human milk. as the benefits of breastmilk are well known, internet-based milk sharing and social media have enabled women who have milk to share with women who require it. some of these sites facilitate altruistic dona- tion, whereas others offer milk for sale. the spread of peer-milk sharing

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324 r.m. shaw and m. morgan in many countries has caused concern for health professionals and groups such as the us food and drug administration (us fda) and la leche league international, who have voiced caution about the risks of unregulated breastmilk exchange due to the transmission of viruses and pathogens (tigchelaar et al. 2014). the us fda (2010), for exam- ple, recommends ‘against feeding your baby breast milk [sic] acquired directly from individuals or through the internet.’ in the media, on blog posts, and in research accounts, mothers who fail to comply with these official public health recommendations are portrayed as morally irresponsible, naïve, or ignorant (see carroll 2014:473; carter et al. 2015:2; tuteur 2012). a recent source of consternation over online milk sharing occurred in response to the publication of a study by keim et al. (2013, 2014). in this study, it was reported that human milk purchased over the internet showed high levels of bacterial growth and contamination, reflecting poor milk collection, storage, and unsafe milk transportation. the study brought considerable media attention to the practice in the usa and elsewhere, further discrediting peer-milk sharing as risky and unsafe. critics were quick to point out that news coverage of the risks associ- ated with peer-milk sharing failed to convey that keim et al.’s research was based on breastmilk purchased from a commercial source over the internet and not from altruistic milk sharing. accordingly, while breast- milk is alienated from the bodies of donors in the course of altruistic online peer-milk sharing, advocates maintain that the chain of distribu- tion and the social management of the milk in the online setting, as a bodily fluid and a gift, is treated differently to the purchase and sale of breastmilk (gribble 2013, 2014a; palmquist and doehler 2014). gribble’s (2013, 2014a) empirical research, for example, shows that those who gift milk put store in their relation to the recipient as a vul- nerable other in need and that where possible they prefer to transfer the milk in person. according to gribble, donors and recipients on web- sites and blog posts state that they engage in informal screening pro- cesses and give verbal consent to the donative exchange. as such, the women and families who use online sites subscribe to what health pro- fessionals identify as the pillars of safe milk sharing; informed choice, www.ebook3000.com

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13 bio-intimate economies of breastmilk … 325 donor screening, safe handling, and home pasteurisation (walker and armstrong 2012). moreover, these women distinguish online peer-milk sharing from milk that is informally sold over the internet in terms of the trustworthiness of donor. their view is that if the donor is prepared to give breastmilk to their own baby, then it is safe to give to a stranger. undergirding these accounts is an assumption that the altruis- tic donor has taken the requisite safety precautions to ensure hygienic standards when pumping, handling, storing, and distributing her milk. the non-contamination and quality of the donor’s breastmilk is thus assured by the donor’s good intentions. where money changes hands, however, the donor’s motives are considered to be questionable— a view kroløkke and petersen (2017) note in relation to the debates against commercial surrogate pregnancy. once the transaction is com- pleted, the remunerated donor’s obligation to the recipient is annulled. contrastingly, as gribble (2013) points out in her study, online altruis- tic donors do not want their gift to be entirely forgotten. instead, they want recipients to appreciate the value of their donated breastmilk as a sacrifice of their time, labour, and effort. as a display of maternal affect and care, the donors gribble surveyed in her study construct the gift of breastmilk as ‘a part of the donor’s self’ (2013:458). peer-milk sharing thus conforms to a soft version of altruism as relational or reciprocal gifting (shaw 2017). it bears noting that even before publication of the keim et al. study, gribble and hausman (2012) argued that the risks of informal peer- milk sharing were exaggerated. they suggested that the warning against peer-milk sharing stems from a ‘yuk factor’ (shaw 2004), reflecting cul- tural distaste around sharing intimate bodily parts and the potential for pollution or contamination when exchanging bodily fluids with stran- gers about whom little or nothing is known. although there are health risks associated with intercorporeal activity of any kind, the concerns raised by breastmilk sharing detractors are value-laden, based on cul- tural ideas about what should be shared between differently embodied subjects. the moral regulation and safety of breastmilk donation is of particular concern to healthcare professionals charged with managing its ‘paradoxical’ status in the nicu, as carol bartle (2010) observes. it is to this part of the discussion that we now turn.

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326 r.m. shaw and m. morgan donor milk banks and the benefits of donor milk for premature infants from the opening of the first donor milk bank in vienna in 1909 until the mid-1980s, milk banks proliferated around the world. a combi- nation of factors, including the development of artificial formulas for preterm infants, concerns by neonatologists that infants fed on banked human milk were not meeting the growth recommendations, and the emergence of hiv/aids and cytomegalovirus (cmv) found in breast- milk, led to the closure of many banks. guidelines were developed to ensure that appropriate screening and management was in place to protect vulnerable infants (see hmbana 2013). over the last 15 to 20 years, there has been increased research into nutrition for premature babies, leading to an awareness of the benefits of human breastmilk for this population. as such, human donor milk banking has made a resur- gence, with the majority of emerging milk banks now attached to neo- natal units. groups such as the human milk bank of north america (hmbana), human milk banking association of south africa, european milk banking association, and the national institute of clinical excellence (nice) guidelines for donor breastmilk banks in the uk all provide comprehensive guidance for the setting up and operation of donor milk banking services. australian milk banks and new zealand neonatal facilities have also obtained best practice guidance from the western australia prem bank guidelines (hartmann et al. 2007). there are now five donor milk banks in australia, including one that is community based (australian government department of health 2014). currently, in new zealand, there is one hospital based donor milk bank at christchurch, which was set up in 2014 to provide pas- teurised donor milk for babies in the nicu. current recommendations and practices for human milk donation specify donor screening, safe expressing and collection, bacterial testing, pasteurisation, and freezing. some recommend the pooling of milk. the process of pasteurisation of human milk is designed to reduce or elimi- nate the risk of transmission of bacterial and viral disease (o’connor et al. 2015; stock et al. 2015). pasteurisation does negatively affect some www.ebook3000.com

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13 bio-intimate economies of breastmilk … 327 of the anti-infectious properties of human milk. as human milk is a live substance, factors such as maternal t cells, b cells, macrophages, and neutrophils are inactivated when pasteurisation takes place. secretary iga, lactoferrin, and lysozyme activity is reduced. bile salt stimulated lipase is also inactivated. this may cause reduced fat absorption. it is still unclear whether pasteurisation affects oliogosaccharides (akinbi et al. 2010; ewaschuk et al. 2011). as for the nutritional properties of donor milk following pasteurisa- tion, it has been reported that protein, fat, and carbohydrate levels are not affected. however, a recent study from brazil (vieira et al. 2011) has shown that there may be a modest decrease in the protein and fat content of breastmilk when pasteurised, frozen, and thawed. there is an emerging body of scientific literature documenting the effects of poten- tially beneficial bacteria in breastmilk, as improved technology and testing enables the detection of more bacteria. what the role these bac- teria play in breastmilk has yet to be confirmed (khodayar-pardo et al. 2014). hmbana and nice guidelines promote the use of donor screen- ing and pasteurisation of donor milk. these guidelines are drawn from blood donation and screening protocols. the screening of potential donors takes into account lifestyle and health status, including medi- cations, smoking, alcohol, blood transfusions, organ donation, risk of creutzfeldt-jakob disease, chronic medical conditions, infections, risk of sti’s, and any needle procedures indicating drug use. blood is screened for hiv 1 and hiv 2, htlv 1 and htlv 2, hepatitis b, hepatitis c, syphilis, and cmv. cytomegalovirus is a common and usually mild viral illness that belongs to the herpes virus family (see lawrence 2006). occasionally, cmv may be passed to an unborn infant if a mother develops cmv during the early stages of pregnancy. the infant may also contract cmv as they pass through the birth canal if the mother has cmv and breast- milk/breastfeeding has been missed. in full term babies, this is not usu- ally an issue, but for premature infants cmv may be transferred, causing severe acute illness (josephson et al. 2014). freezing has been found to decrease the level of cmv in breastmilk (curtis et al. 2005). due to the fact that most babies receiving donor milk in the nicu are premature,

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328 r.m. shaw and m. morgan women who are tested and have latent cmv are discounted from being donors (unless the milk can be pasteurised), to avoid any risk to these babies. as a large number of women have latent cmv, usually only one in five women who offer their milk is eligible to donate. if a donor has a clear health and blood screen, then donation is commenced. commonly, donor milk banks receive breastmilk from mothers with a term baby, although this is not always the case for nicus. as hartmann et al. (2007: 672) document in relation to the first five months of oper- ation of the prem bank in western australia, only two of a total 47 batches of donor milk were donated by mothers who gave birth to term babies. donor milk is bacterially tested and may be pooled from several donors, as is the case in the usa. bromberg bar yam (2010) comments that the pooling of donor milk is designed to help reduce the nutrient variability of the milk. using pooled milk means that a baby may receive milk from several donors. however, where milk kinship is involved, this may not be acceptable, as islamic law forbids marriage between persons related by milk kinship (see pappano 2016; shaw 2015). because donor milk screening guidelines in the uk are based on the national blood service, donor milk is not currently pooled between donors. in addition, and where practicable, recipients are fed donor milk from as few donors as possible (weaver in shaw 2015:190). in all cases, milk donations in milk banks are traceable even when pooled. the use of raw donor milk in the nicu despite the absence of neonatal milk banks in new zealand hospitals, nicu staff receive requests from mothers wanting to use milk from other women. some staff are uncomfortable with the practice of using donated milk, and they may express disgust or concern about donated breastmilk due to contamination and the risk of infection, as bartle (2010) documented prior to the establishment of the christchurch neonatal milk bank. at maggie morgan’s workplace, most staff agree to facilitate milk sharing if mothers are given appropriate advice. the use of donor breast milk policy guideline was developed at morgan’s workplace once access to documentation on the screening, consent www.ebook3000.com

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13 bio-intimate economies of breastmilk … 329 process, and use of donor milk was available. the development of the guideline followed a specific case in the nicu where a sister’s milk was used for a premature baby. donor breastmilk guidelines are designed to help staff provide information for women so that they are able to make an informed choice, and to ensure that staff feel comfortable in the process. the guidelines at morgan’s workplace took up to two years to develop and were then sent out for wide consultation by paediatric dietitians, infectious diseases team, and neonatal and maternity units. a legal team assisted with the development of the information sheets and consent documents. in line with grosvslien and gronn (2009), who contend that the use of raw donor milk is reasonable in a country, such as new zealand, with a very low incidence of hiv and hepatitis, the use of donor breast milk guideline policy states that while wellington hospital is unable to provide pasteurisation, thorough screening and freezing can eliminate some of these risks. during a conversation with parents about the use of donor milk, they are made aware that the milk is unpasteurised. this information is contained within the consent document, and very similar documentation is also made available for the donor. confidentiality is maintained for both parties. since the breastmilk donation policy was introduced at morgan’s unit, the use of donor milk has evolved. frequently, mothers who have ample supplies of ebm offer their excess milk, at which point a con- versation with staff around donating is initiated. if a mother indicates willingness to donate breastmilk in the nicu, she is given an informa- tion sheet so as to make an informed choice about donating her milk. a discussion with the lactation consultant and a neonatologist is then undertaken, followed by the completion of a health history question- naire. if this is satisfactory, arrangements are made for screening bloods to be taken. previous antenatal bloods and history are available within the mother’s notes while their babies are in the unit. if the health screen and bloods are clear, a consent form is signed and the woman is given information about the donation process. similar consent procedures are followed in nicus elsewhere (see carroll 2016). surprisingly, from the perspective of unit staff, many women are una- ware of some of the risks of using donor milk, such as the transfer of viruses, certain medications (e.g. anti-depressants), and substances such

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330 r.m. shaw and m. morgan as alcohol or nicotine. staff also make clear to the donor mother that her own baby is her priority, and while the unit will accept as much milk as the mother wants to gift, she can stop donating at any time. a discussion then takes place to ensure correct hygiene around the col- lection, storage, and transporting of ebm, as well as the cleaning of expressing equipment. as the donor milk within the neonatal unit is often from mothers with premature babies, it enables the unit to gesta- tionally match the milk to the baby. this occurs in the majority of cases. when milk is available from more than one donor; that is, a premature baby mother and a term mother, options to provide infants with the appropriate milk are enhanced. when a mother has mastitis, skin infec- tions or diarrhoea and vomiting, it is advised that she refrain from pro- viding donor milk during that period. however, she is able to continue providing her milk for her own baby. bacterial screening does not take place, as the neonatal unit only accepts frozen breastmilk from screened mothers with babies in the unit and these mothers are already follow- ing the hospital guidelines. all donor milk is frozen prior to use. the mother is given appropriate labels for her donor milk and places the milk she wants to gift in a tray made available to her. for a prospective recipient mother, a conversation is undertaken by a neonatologist on the need for donor milk, the most common reason being that the mother is unable to produce enough milk herself for the baby. once this conversation has taken place, information sheets are provided and any questions are answered by the lactation consultant or senior staff. consent is formalised, and a signed copy of the consent form is kept in the baby’s notes and by the lactation consultant. a sheet with the donor number, but no name, is then placed in the baby’s file to receive the donor milk. a tracking sheet is commenced which records the donor number, date expressed, and times given. a record is also kept on a database that tracks the donor information and the recipient baby’s information. a range of practices are thus undertaken by staff working with breast- milk in the nicu. principally, donated breastmilk is treated as a precious substance in short supply. staff who work at nicus may wear gloves when handling babies, drawing up medications, putting in iv lines, and when handling blood and milk. the main reason for this is to reduce www.ebook3000.com

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13 bio-intimate economies of breastmilk … 331 the risk of cross-infection, as a staff member is usually dealing with more than one baby or mother at a time. it is not the case at morgan’s work- place, but on some units staff wear gloves (and sometimes masks) to dispense breastmilk and during tube feeds. while the rationale for wear- ing gloves is to ensure hygienic standards, this procedure may reinforce and question the perception of breastmilk as liquid gold, thus resulting in constructions of breastmilk in terms of what hausman (2003) calls ‘doublespeak’. one mother in bartle’s (2010) study, for instance, thought that the nurse who assisted her to latch her baby onto the breast wore gloves because she thought the mother was ‘dirty’. as twigg (2000) points out in her research on care and bodywork, practices which bring health professionals into contact with other people’s bodies are marked by ambivalence. because working on and with other people’s bodies is often regarded as demeaning, it is offset by distancing techniques such as the use of screens or gloves, which serve to delineate the caregiver from contact with abject bodily zones. for staff who work in nicus, wear- ing gloves has a dual purpose, intertwining the biological with the ethical, thereby transforming breastmilk from a potentially contaminated bodily fluid associated with risk to a medicine fit for premature babies. donor milk use the use of donor milk at morgan’s tertiary nicu and maternity facility has been in place for over four years, with nine donors and 14 recipients in 2012, seven donors and 16 recipients in 2013, nine donors and 22 recipients in 2014, and eight donors and 31 recipients in 2015. while a few babies received milk from more than one donor over this period, the majority received donor milk from a single donor. the most common clinical indication for receiving donor milk is due to low maternal milk supply, for which there is often no known cause (see gribble 2014b). in such cases, information on ways to help increase milk supply is given, including using natural methods of stim- ulating supply or supplements such as fenugreek or domperidone, a medication which has the side effect of increasing prolactin levels. mothers who are unable to supply enough breastmilk often feel a sense

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332 r.m. shaw and m. morgan of relief when donor milk is used, as it reduces pressure on them to pro- duce enough milk for their baby, although staff continue to support them to express their own breastmilk. in some cases, not having their milk production observed and calculated helps mothers to relax, which in turn may increase milk supply. another group of women for whom donor milk is frequently used are those women who are not expressing frequently or do not choose to express, some of whom have never expressed or breastfed other children. the experience of nicu staff is that young teenage mothers are a group who are difficult to motivate to continue expressing for their premature babies. these young women tend not to commit to the round-the-clock demands of using a breast pump, although they are provided with infor- mation and expensive top-of-the-line electric pumps while they are in the nicu. various reasons are given for these women’s reluctance to breastfeed. for young women, this may include negative body image as a new mother and/or perceptions of breastmilk and/or breastfeed- ing as disgusting, unpleasant, embarrassing, or shameful (kukla 2006). observations by nicu staff at morgan’s workplace indicate that the presence and views of young fathers regarding breastmilk expression may also be influential. it needs to be noted that sharing ebm is organisationally and often logistically complex. it requires an assemblage of actors: donors willing to share their breastmilk, babies, breast pumps, refrigeration processes, and reliable institutions and communities willing to facilitate and man- age the exchange process and delivery system. breast pumping, even under normal circumstances, requires considerable effort, bodywork, and perseverance (stearns 2010). many women in the nicu strug- gle with the long-term demands of expressing, sometimes enduring the process for up to 14 weeks (see carroll 2016). for young mothers who have not chosen pregnancy, having a baby, especially one born prema- turely, may be psychologically challenging. in such cases, using a pros- thetic device such as a breast pump may be experienced as an additional intrusion to a young woman’s embodied identity rather than a perform- ative enhancement that assists the transition to motherhood. many of these young women will often choose not to breastfeed once the babies are old enough to feed orally. www.ebook3000.com

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13 bio-intimate economies of breastmilk … 333 one of the first cases of donor milk use at morgan’s workplace occurred when a mother unexpectedly passed away after giving birth to a very premature infant. the sister of the mother, who had recently given birth herself, arrived in the unit with her own milk to give to her niece. at the time, there were no guidelines in the hospital for the use of donor milk, but the neonatologists were very keen for this baby to receive donor milk, if available. in consultation with the neonatologists, infection control, and the family, a meeting was held and information was given to both the father of the baby and the sister so that informed consent was given. the sister then continued to provide her milk for her niece for some weeks until infant formula could safely be introduced. in another situation, a mother had given birth to a full term baby and then passed away within an hour of the birth. her plan had been to breastfeed, and her partner was very keen for this wish to be ful- filled. it was fortunate that the unit had a considerable supply of full- term donor milk available, and following discussions with the partner and family, this was introduced with consent. a close family friend was a health professional and immediately started to organise a plan for an ongoing supply of donor milk for this baby. also at that time, the unit was receiving phone calls from women who had heard about the mother passing away and wished to donate milk. liaison took place with the unit, the health professional friend and family who wished to ensure that the donor milk was screened following best practice, and they were given a copy of the hospital guidelines. the health professional took it upon herself to arrange screening and delivery of donor milk for this baby once the hospital supply had ended. once the infant was dis- charged, a steady supply of donor milk was provided until the baby was around six months old. it is often a difficult to have a discussion with a family in the case of an infant death (carroll et al. 2014). along with unexpected grief for the family, gaining informed consent for breastmilk donation is merely one of the innumerable processes involving many people that have to be undertaken in the hospital. in cases of neonatal death, it may be some weeks following the passing of the baby before a mother can make a decision about milk that was expressed and stored for her own baby’s use. in these situations, a lactation consultant or senior nurses may

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334 r.m. shaw and m. morgan become involved to discuss with the mother how to manage her lacta- tion following the death, and decisions regarding any stored breastmilk in a unit are made on a case-by-case basis. at morgan’s workplace, one mother was unable to make a decision for about three weeks, before requesting to take the milk that had been stored in the freezers. as a rit- ual to commemorate and mourn her infant’s death, the mother said she had decided to take her milk in order to pour it onto the baby’s grave. where a baby has died, a mother who has been breastfeeding or expressing may immediately offer her milk to be used by other babies. for these women, the loss of a baby causes her grief for not only the baby but for herself as a mother. welborn (2012) found that for many of the women interviewed for her study, expressing and offering their milk helped in the healing process, allowing them a continuation of feelings of motherhood as well as a sense of connection to their baby. like deceased donation where families donate their loved ones’ organs (see shaw 2015), breastmilk donation may give some women a positive feeling out of a tragic loss. donating milk in these situations can also be other-oriented. in arnold and borman’s (1996) research, some women donated their surplus milk so as not to waste what they had expressed, or to help premature or sick babies to survive. the views of nicu staff and parents informal discussions with staff at morgan’s workplace about the use of donor milk indicate that they are comfortable with the use of screened donor milk and will often encourage women to donate if they comment they have too much milk. unit staff view the practice as beneficial for the premature infants in their care. although causal links are impossible to decisively pinpoint, there is some indication that the use of donor breastmilk in the nicu has contributed to low rates of nec. requests to donate milk are received from women outside the neo- natal unit. typically, however, only women with babies in the unit are allowed to provide their milk until formal milk banking facili- ties are established. the drawback of using raw screened frozen donor www.ebook3000.com

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13 bio-intimate economies of breastmilk … 335 milk where formal milk banking and pasteurisation is unavailable is that it occasionally causes issues with supply. in addition to health screen requirements for cmv, a small percentage of women who offer to donate are unable to due to the fact that they are either taking con- traindicated medication, have had a blood transfusion within the last six months, or have lived in the uk and are therefore declined for the risk of creutzfeldt-jakob disease. the other most common cause of not being accepted is latent cmv. in the nicu, it appears that women will only offer their milk if they know they do not have many of these risks factors. only around a quarter of women screened are able to provide donor milk for the unit. given the high rates of cmv, there is reason to pursue the case for a milk pasteuriser and full milk banking facilities. if more donor milk were available, then the range of babies that could receive said milk would increase. a study by esquerra-zwiers et al. (2016) explored the decision- making process of mothers as they provided consent for the use of donor milk. most of the mothers in the esquerra-zwiers et al. study, like the mothers in the new zealand nicu, ‘wanted the best for their baby’, and relied on their health professionals’ advice that donor breastmilk was better than infant formula, especially for preterm infants. many of these mothers wanted to provide their own breast- milk for their baby and felt uncomfortable with the prospect of giv- ing someone else’s milk. like recipients of online peer-milk sharing, the mothers wanted assurance that the donor’s profile, as well as her lifestyle choices, diet, and health, were considered. for some mothers, issues around insufficient milk supply produced additional emotional anxiety, as they already felt that their bodies had ‘failed’ them by hav- ing a premature birth. a key concern for mothers in the nicu then, as noted above with regard to online peer-milk sharing, relates to trust; trust in the donor that she is not at risk, and trust in the health professionals to ensure the milk is safe. the majority of mothers in the nicu who received donor milk for their premature baby express relief that this option is available. one woman had no desire to breastfeed her infant or express, but was happy for the baby to have donor milk as recommended by medical staff. situations such as this precipitate discussion among staff, whose job it is

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336 r.m. shaw and m. morgan to encourage mothers to at least initiate breastfeeding. in this case, the decision was made to advocate for the baby. nicu donors have various motivations for gifting their surplus milk. these include gratitude for their premature baby’s life and a sense of obligation to give back to the nicu, identification with other moth- ers of premature infants in the unit, and awareness of the benefits of expressed breastmilk. some donors are reassured about their milk being screened and passing all the tests. for these mothers, who are particular about hygiene and milk collection for their own infants, the validation of their milk as uncontaminated and safe makes them happy and will- ing to share. like deceased organ donation in new zealand, confidentiality around breastmilk donation is maintained between donor and recipient mothers in the nicu. notwithstanding confidentiality protocol, unit staff are aware that some women appear to know who is receiving their milk or who the donor is. the donors are often aware if their baby is in the same room as the recipient baby and may see that their milk is being given to that infant. some will retain confidentiality, even though they may have developed a relationship with the mother of the other baby receiving their milk. one donor disclosed to morgan, for example, that she found it very satisfying to know her milk was being given to a very premature baby of a young teenage mother who was an infrequent visitor to the unit and had very little breastmilk for her baby. as she was in the same room as the baby receiving the milk, the donor mother was able to see the baby growing and thriving on her milk along with her own babies. conclusion breastmilk is a bodily fluid that has both positive and negative implica- tions in terms of its transmission and social management as a biologi- cal material and food with therapeutic qualities. although the informal and unregulated movement of breastmilk is officially frowned upon in online settings and in the nicu, breastmilk donors often assert their moral agency to donate against the epistemic authority of public health mandates. by going against the normative grain, breastmilk donors www.ebook3000.com

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13 bio-intimate economies of breastmilk … 337 construct themselves as ethical. moreover, by sharing their ‘liquid gold’ breastmilk, their actions are in line with contemporary understandings of moral motherhood insofar as they recognise the benefits of breast- feeding and the corresponding risks of using infant formula. in the infant feeding debates, good mothers know that breast is best; if they cannot breastfeed their infants, they will source donor milk as a second best option. for mothers who express breastmilk for others, the gift is self-sacrificial. donor breastmilk is given without return, excepting the acknowledgement of maternal debt to the donor, who seeks recognition for breastmilk expression and its distribution as physically hard wrought and time-consuming. breastmilk donors may not be co-present or physically close to their recipients; they may not be biologically or legally related. they are, however, ‘emotionally aligned’ to the recipient through maternalist affects of altruism and care, in much the same way that kroløkke and petersen describe donors of reproductive gifts. the donors we have dis- cussed in this chapter do not receive financial compensation for their milk. from their perspective, this would debase the gift and diminish the status of breastmilk as a sacred substance. their primary concern is to help babies in need, thereby supporting other mothers and their families. peer-milk sharers and nicu donors do not typically establish long-term relationships with their recipients, due to confidentiality pro- tocol or geographic distance. the fact that they do not ‘connect’ on an ongoing face-to-face basis—even though they extend bio-intimate prac- tices to the public domain that have historically been confined to the private sphere—legitimises their moral identities as responsible ‘biologi- cal citizens’ (rose and novas 2005). notes 1. theories of lactational heredity are an extreme example. lactational heredity is the belief that the moral character of the wet nurse and the quality of her milk could influence the character of the child. 2. see bartle (2010) and carroll (2014) for extended discussions of this transformation.

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338 r.m. shaw and m. morgan acknowledgements we are grateful to carol bartle for her constructive comments on an earlier draft of this chapter. references american academy of pediatrics. (2012). breastfeeding and the use of human milk, pediatrics, 129(3). arnold, l. d. w., & borman, l. l. (1996). what are the characteristics of the ideal human milk donor? journal of human lactation, 12(2), 143–145. akinbi, h., meinzen-derr, j., auer, c., et al. (2010). alterations in the host defense properties of human milk following prolonged storage or pasteuri- zation. journal of pediatric gastroenterology and nutrition, 51, 345–352. australian government department of health. (2014). donor human in australia—issues and background paper. canberra: milk banking commonwealth of australia. bartle, c. (2010). going with the flow: contemporary discourses of donor breastmilk use and breastmilk in a neonatal intensive care setting. in r. shaw & a. bartlett (eds.), giving breastmilk: body ethics and contempo- rary breastfeeding practice (pp. 122–133). bradford, on: demeter press. bartlett, a. (2005). breastwork: rethinking breastfeeding. sydney, australia: university of new south wales press. bromberg bar yam, n. (2010) the story of the mothers’ milk bank of new england. in r. shaw & a. bartlett (eds.), giving breastmilk: body ethics and contemporary breastfeeding practice (pp. 98–109). bradford, on: demeter press. carroll, k. (2014). body dirt or liquid gold? how the ‘safety’ of donated breastmilk is constructed for use in neonatal intensive care. social studies of science, 44(3), 466–485. carroll, k. (2016). the milk of human kinship: donated breast milk in neonatal intensive care. in c. krolokke, l. myong, s. w. adrian, & t. tjornhoj-thomsen (eds.). critical kinship studies (pp. 15–31). london: rowman & littlefield international ltd. carroll, k. e., lenne, b. s., mcegan, k., opie, g., amir, l. a., bredemeyer, s., … polverino, j. (2014). breast milk donation after neonatal death in australia: a report. international breastfeeding journal, 9(23), 1–9. carter, s. k., reyes-foster, b., & rogers, t. l. (2015). liquid gold or russian roulette? risk and human milk sharing in the us news media. health, risk & society, 17(1), 30–45. www.ebook3000.com

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13 bio-intimate economies of breastmilk … 339 curtis, n., chau, l., garland, l., et al. (2005). cytomegalovirus remain viable in naturally infected breast milk despite being frozen for 10 days. archives of disease in childhood: fetal & neonatal edition, 90(6), 529–530. ewaschuk, j. b., unger, s., harvey, s., o’connor, d. l., & field, c. j. (2011). effect of pasteurization on immune components of milk: implications for feeding preterm infants. applied physiology, nutrition and metabolism, 36(2), 175–182. esquerra-zwiers, a., rossman, b., meier, p., engstrom, j., janes, j., & patel, j. (2016). “it’s somebody else’s milk”: unraveling the tension in mothers of premature infants who provide consent for pasteurized donor human milk. journal of human lactation, 32(1), 95–102. faraghi ahrabi, a., & schanler, r. j. (2013). human milk is the only milk for premies in the nicu. early human development, 89, s51–s53. gribble, k. d. (2013). peer-to-peer milk donors’ and recipients’ experiences and perceptions of donor milk banks. journal of obstetric, gynecologic, and neonatal nursing, 42, 451–461. gribble, k. d. (2014a). perceptions and management of risk in internet- based peer-to-peer milk sharing. early child development and care, 184(1), 84–98. gribble, k. d. (2014b). ‘a better alternative’: why women use peer-to-peer shared milk. breastfeeding review, 22(1), 11–21. gribble, k. d., & hausman, b. l. (2012). milk sharing and formula feed- ing: infant feeding risks in comparative perspective? australasian medical journal, 5(5), 275–283. grøvslien, a. h., & grønn, m. (2009). donor milk banking and breastfeed- ing in norway. journal of human lactation, 25(2), 206–210. hair, a. b., peluso, a. n., hawthorne, k. m., perez, j., smith, s. p., khan, j. y., … abrams, s. a. (2016). beyond necrotizing enterocolitis prevention: improving outcomes with an exclusive human milk-based diet. breastfeeding medicine, 11(2), 70–74. hartmann, b. t., pang, w. w., keil, a. d., hartmann, p. e., & simmer, k. (2007). best practice guidelines for the operation of a donor human milk bank in an australian nicu. early human development, 83, 667–673. hausman, b. l. (2003). mother’s milk: breastfeeding controversies in american culture. new york: routledge. hausman, b. (2011). viral mothers: breastfeeding in the age of hiv/aids. ann arbor, mi: university of michigan press. heiman, h., & schanler, r. j. (2006). benefits of maternal and donor human milk for premature infants. early human development, 82, 781–787.

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340 r.m. shaw and m. morgan human milk banking association of north america. (2013). guidelines for the establishment and operation of a donor human milk bank. hmbana. josephson, a. c., caliendo, a. m., kirk, a., easleu, m. s., knezeivic, a., shenvi, a., … roback, j. d. (2014). blood transfusion and breast milk transmission of cytomegalovirus in very low-birth-weight-infants. jama pediatrics, 168(11), 1054–1062. keim, s. a., hogan, j. s., mcnamara, k. a., gudimetla, v., dillon, c. e., kwiek, j. j., et al. (2013). microbial contamination of human milk pur- chased via the internet. pediatrics, 132(5), e1227–e1235. keim, s. a., mcnamara, k. a., jayadeva, c. m., braun, a. c., dillon, c. e., & geraghty, s. r. (2014). breast milk sharing via the internet: the practice and health and safety considerations. maternal and child health journal, 18(6), 1471–1479. khodayar-pardo, p., mira-pascual, l., collado, m. c., & martinez-costa, c. (2014). impact of lactation stage, gestational age and mode of delivery on breast milk microbiota. journal of perinatology, 34(8), 599–605. kroløkke, c. and petersen, m. n. (2017). keeping it in the family: debating the bio-intimacy of uterine transplants and commercial surrogacy. in r. m. shaw (ed.), bioethics beyond altruism: donating and transforming biological materials. basingstoke: palgrave macmillan. kukla, r. (2006). ethics and ideology in breastfeeding advocacy campaigns. hypatia, 21(1), 157–180. lawrence, r. m. (2006). cytomegalovirus in human breast milk: risk to the premature infant. breastfeeding medicine, 1(2), 99–107. long, d. (2003). breast sharing: cross-feeding among australian women. health sociology review, 12(2), 103–110. o’connor, l., ewaschuk, j. b., & unger, s. (2015). human milk pas- teurization: benefits and risks. current opinions in clinical nutrition and metabolic care, 18, 269–275. murphy, e. (2000). risk, responsibility, and rhetoric in infant feeding. journal of contemporary ethnography, 29(3), 291–325. murphy, e. (1999). “breast is best”: infant feeding decisions and maternal deviance. sociology of health & illness, 21(2), 187–208. palmquist, a. e. l., & doehler, k. (2014). contextualizing online human milk sharing: structural factors and lactation disparity among middle income women in the u.s. social science and medicine, 122, 140–147. pappano, m. a. (2016). between blood and milk, east and west: muslim adop- tive mothering in a transnational context. in m. a. pappano & d. m. olwan (eds.), muslim mothering: global histories, theories, and practices (pp. 115–138). bradford, on: demeter press. www.ebook3000.com

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13 bio-intimate economies of breastmilk … 341 rautava, s. (2016). early microbial contact, the breast milk microbiome and child health. journal of developmental origins of health and disease, 7(1), 5–14. rose, n., & novas, c. (2005). biological citizenship. in a. ong & s. j. collier (eds.), (2005). global assemblages: technology, politics, and ethics as anthropological problems (pp. 439–463). malden, ma: blackwell publishing. schanler, r. j. (2001). the use of human milk for premature infants. pediatric clinics of north america, 48(1), 207–219. shaw, r. (2004). the virtues of cross-nursing and the ‘yuk factor’. australian feminist studies, 19(45), 287–299. shaw, r. (2007). cross-nursing, ethics and giving breastmilk in the contempo- rary context. women’s studies international forum, 30(5), 439–450. shaw, r. m. (2015). ethics, moral life and the body: sociological perspectives. basingstoke: palgrave macmillan. shaw, r. m. (2017). bioethics beyond altruism. in r. m. shaw (ed.), bioethics beyond altruism: donating and transforming biological materials. basingstoke: palgrave macmillan. stearns, c. (2010). the breast pump. in r. shaw & a. bartlett (eds.), giving breastmilk: body ethics and contemporary breastfeeding practice (pp. 11–23). bradford, on: demeter press. stearns, c. a. (1999). breastfeeding and the good maternal body. gender & society, 13(3), 308–325. stock, k., griesmaier, e., brunner, b., neubauer, v., kiechl-kohlendorger, u., & traworger, r. (2015). pasteurization of breast milk decreases the rate of postnatally acquired cytomegalovirus infections, but shows a nonsignifi- cant trend to an increased rate of necrotizing enterocolitis in very preterm infants—a preliminary study. breastfeeding medicine, 10(2), 113–117. sunday: milk sisters. (2016). television programme, tvnz, new zealand. 12 june, 2016. sullivan, s., schanler, r. j., kim, j. h., patel, a. l., trawöger, r., kiechl- kohlendorfer, u., … lucas, a. (2010). an exclusively human milk-based diet is associated with a lower rate of necrotizing enterocolitis than a diet of human milk and bovine milk-based products. the journal of pediatrics, 156(4), 562–567.e1 tigchelaar, p. m., goodell, s. l., allen, j., & fogelman, a. (2014). a mixed- methods observational study of human milk sharing communities on facebook. breastfeeding medicine, 9(3), 128–134. tuteur, a. (2012). think peer-to-peer donated breastmilk is safe? think again. retrieved august 23, 2016, from http://www.skepticalob.com/2012/10/ think-peer-to-peer-donated-breastmilk-is-safe-think-again.html.

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342 r.m. shaw and m. morgan twigg, j. (2000). carework as a form of bodywork. ageing & society, 20, 389– 411. walker, s., & armstrong, m. (2012, spring). the four pillars of safe breast milk sharing. midwifery today, 34–36. u.s. food and drug administration. (2010). use of donor human milk. http:// www.fda.gov/scienceresearch/specialtopics/pediatrictherapeuticsresearch/ ucm235203.htm. vieria, a. a., soars, f. v., & pimenta, h. p. (2011). analysis of the influ- ence of pasteurization, freezing/thawing, and offer process of human milk’s macronutrient concentrations. early human development, 87(8), 577–580. vohr, b. r., poindexter, b. b., dusick, a. m., & mckinley, l. t. (2006). beneficial effects of breast milk in the neonatal intensive care unit on the developmental outcome of extremely low birth weight infants at 18 months of age. pediatrics, 118(1). welborn, j. m. (2012). the experience of expressing and donating breastmilk following a perinatal loss. journal of human lactation, 28(4), 506–510. who/unicef. (1989). protecting, promoting and supporting breastfeeding: the special role of maternity services. geneva: who. world health organisation. (2003). global strategy for infant and young child feeding. geneva: who. authors’ biography rhonda m. shaw is associate professor in sociology at victoria university of wellington, new zealand. her research interests include the sociology of morality and ethics, and empirical research on assisted human reproduction, breastmilk sharing, and organ and tissue exchange. maggie morgan rn, rm, ibclc, ma (applied) midwifery, grad. dip. community health (maternal and child health), post grad certification in clinical nursing (neonatal nursing), plunket certificate. maggie morgan has over 30 years of experience in maternal and child health as a midwife, plunket nurse and lactation consultant. for the last nine years, she has worked in the neonatal intensive care unit in a large tertiary hospital in wellington, new zealand, as a clinical nurse educator/lactation consultant. www.ebook3000.com

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index a abjection 320 abortion 41–45, 52, 172, 173, 180 abortuses 41 absolute uterine factor infertility (aufi) 190 acquired immune deficiency syndrome (aids) 42, 77 adelaide (city in australia) 190 adherent bone marrow cells (abmc) 95 adoption, open 117, 121, 124, 126, 133 advisory committee on assisted reproductive health (acart) 117, 118, 147, 149 affect 12, 15, 81, 193, 195, 201, 203 affective relations 4, 21, 193 alcoholism 225 all about surrogacy.com 173, 176 almeling, rene 11, 14 altruism 4–9, 13, 16, 20, 38, 52, 69, 128, 169, 195, 196, 199, 200, 204, 206, 207, 217 altruistic donor 11 ambivalence, clinical 122 american academy of pediatrics 321, 322 anatomists 6, 35, 37, 40, 51 anatomy 4, 17, 35–38, 40 animals, use in scientific research 68, 74, 80 anonymity 43 antigens 267, 280 appadurai, arjun 6, 12 arendt, hannah 271, 274, 277, 278 attachment parenting 197, 202, 297, 300, 311 australian and new zealand intensive care society (anzics) 241 autism 42, 91, 95 © the editor(s) (if applicable) and the author(s) 2017 r.m. shaw (ed.), bioethics beyond altruism, doi 10.1007/978-3-319-55532-4 343

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344 index autologous stem cell therapeutics 92, 94, 107 b baby friendly hospital initiative (bfhi) 321 bacterial contamination 323 bangalore (city in india) 92, 95, 98 bartle, carol 325, 331 bartlett, alison 5 benefit 4, 9, 13, 22, 23, 40, 42–46, 50, 52, 65, 75, 117, 167, 202, 229–231 beneficence 22 berlant, lauren 12, 15, 193 bharadwaj, aditya 18, 92, 95, 100, 206 bijker, wiebe 265, 266 bio-economy 10, 12, 14, 19 bio-intimacy 15, 190, 192–195, 201, 203, 205–207 biocapital 9, 12–14 bioethics 4, 5, 7, 18, 46, 47, 91–94, 97, 103, 161, 207 biopolitics 12 bioscape 13, 15 biotechnologies 9, 18, 94, 97, 99, 107, 193, 194, 216, 231, 233 biovalue 9, 10, 13, 18, 201 blastocyst 47–50 blood and antigen matching 280 blood donation 8 blood tests 294 bodily integrity 166, 172, 174, 179 body worlds (art project) 39, 40 body project 11, 232 body work 232 boston (us city) 295 bowlby, john 297 brain damage 246, 249 brain death brain stem death 241 determination of 22 diagnosis 100, 106 international definitions of 241 mechanisms of 127 brain injury 103 brännström, mats 189, 190, 201 brazil 37 breastfeeding advocacy 294, 307–309 difficulty 299 exclusionary 23 exclusive 23, 292, 296–300, 306, 308, 310, 311, 321 inclusive 23 sharing 5, 22, 23, 296–299, 309, 311, 323, 337 breast is best discourse 298, 323 breast milk. see human milk breast pump 293, 332 british medical association 170 bromberg bar yam, naomi 293, 310, 328 c cadaver 36, 43, 50–53 cadaveric donation 217, 227 caesarean section birth 166, 203 canada 165 cancer prevention 294 treatment 294 cardiac death 240 cardio-respiratory system 240, 246 care, goals of 130 www.ebook3000.com

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care, right to 106 caring activities 305 caring professionals 218 carroll, katherine 5 catholicism 75, 145 charity 98, 167 chennai (city in india) 92 chest surgery 292, 300 child care 298 childbirth 116, 127, 167, 203 child custody refusal of 175, 180 childlessness 171 children, rights of 125, 127, 144, 180 choice 62, 65, 72, 77, 125, 126, 160, 194, 199, 205, 224 christchurch (city in new zealand) 326 chronic kidney disease (ckd) 269 cigarette smoking 172 cisgender 22, 298, 300 citizenship 5, 9, 22, 194, 196, 204–206 clinical practice 37 clinical trials 10, 16, 97 cohen, lawrence 15, 191 coma irreversible 241 coming out 301 commercialisation 7, 10, 66 commissioning couple (surrogacy) 156, 168, 200, 207 commodification 8, 11, 12, 20, 180, 192 commodified healthcare 272 compensation 7, 11, 69, 170, 178, 191 index 345 computed topography (ct) scanning 247 congenital abnormality 175 consent competency 151, 152 informed 9, 17, 18, 37, 38, 40, 52, 63–67, 69–72, 74–78, 80, 93, 174 recall 73–75, 77 withdrawal 65, 67 contracts contractual obligations 179 employment contracts 172 cooper, melinda 3, 10–12, 15, 191 corporeal generosity 10 corporeality 122 court, legal 70 creutzfeldt-jakob disease 327, 335 criminality 171 cross-nursing (breastfeeding) 20 crowley-matoka, megan 216, 266 cryopreserved embryos 117 culture beliefs 257 norm 256 practices 257 custodial care 157 cyclosporine 272 cytomegalovirus (cmv) 326, 327 d danish ethical council (der) 196, 197, 199, 202, 204 das, veena 91 dead donor rule 241 death acceptance of 124 appearance of 46

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346 index certification of 240, 246 cultural conceptions of 257 diagnosis of 174 interpretations of 247 moment of 258 social conceptions of 266 time of 242, 248 understanding of 39 decision making by proxy 203 declaration of helsinki—ethical principles for medical research involving human subjects 62, 65 delhi (city in india) 92, 98 denmark 190, 198 diabetes 70, 91, 95 dialysis therapy 20 haemodialysis, peritoneal 271 dickenson, donna 10, 191 dignity 8, 17, 38, 52, 91, 99, 103, 105–107, 181 discourse analysis 194, 198, 201 dna 13, 68, 70, 203 dna testing 294 donor screening 325 douglas, mary 118, 219, 221 down syndrome 174 drug use 225 drugs, illegal or illicit 172 dry july (alcohol abstinence cam- paign) 306 duchenne muscular dystrophy (dmd) 91 duty 8, 62, 64, 81, 82, 120, 142, 224 e eats on feets 323 economy affective 12–15, 194 moral 7–9, 16, 282 tissue 5, 9–11 egoism 7 embryo adoption 123, 124 biological status 35 manipulation 35 moral status 16, 35 research use 41 therapeutic use 36, 41 embryo donation (ed) 19, 115, 132 donors 115–133 recipients 115–133 requirements 52 embryology 45, 143, 151, 155, 159 embryonic stem cells (escs) 16, 17, 41, 62, 95 end of life care 21 decisions 240 end-stage renal disease (esrd) 228 end-stage renal failure 227 endocrinology 143 ethics alternative 244, 252 challenges 66 complex 145, 151 cultural 244, 256 deontological 243 ‘everyday’ 94 justice-based 244 libertarian 243 practices 37, 181 problematic spaces 99 social 257 socially orientated 256 socio-cultural 244, 256 www.ebook3000.com

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staff meetings 143 transgressions 224 utilitarian 243 ethical subject 321 ethics committee on assisted reproductive technology (ecart) 147 ethnicity 76 ethnographic fieldwork 19 ethnography, classical 142 ethnography, contemporary 142 eurocentrism 15 european milk banking association (emba) 293, 326 european union tissue and cells directive (2004) 24 expressed breast milk (ebm) 329, 330, 332 extended families 130, 131 eye disease 63, 64, 72, 81 f facebook 131 fallopian tubes, loss of 170 family building 116, 127, 128, 130–132, 201 heterosexual 118, 192, 200, 207 planning 126, 292 satisfaction with medical care 250 female reproductive organs 300 feminism 5, 8, 11, 20, 191 fentiman, linda 292, 293, 307 fertility difficulty 116 expertise 146, 149, 203 practitioners 96 treatment 7, 11, 18, 116 index 347 fertilisation rates 45, 115, 159 financial compensation 129 flory, james 239 formula feeding 300, 304, 311 foetal abnormality 172, 174, 175, 180 reduction 166, 170, 172, 173, 179 tissue research 41, 44 wellbeing 98, 121, 123, 124, 131, 299 fox, renee 7, 191, 216, 217 franklin, sarah 95, 160, 204 free market 20, 166 funerals 247 g gamete donation donor-conceived offspring 117, 126 donor conception 126 donor families 22, 122 donor identity registration 117 gamete donated 5, 122 donors, rights of 122 genetic 175 viability 15 gay rights 118, 205 gender selection 148 genealogy 18, 97, 127 genetics connectedness 118 father 173 gestational labour 165 services 170, 175 gift exchange 216, 217, 221, 232 relation 232

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348 index relationship 38 unconditional 7, 14, 232 gift/commodity framework 10, 191, 192, 207 gift exchange theory (get) 216 gift-giving 11, 21, 128, 129, 133, 204, 207, 217, 226, 306 gift-of-life 21, 216–219, 222, 223, 225, 226, 230–233 ginsburg, faye d. 102 global south 100 globalisation 12, 106 goodwin, michele 308, 309 grandmother 21, 193, 201, 205 gratitude 129, 167, 169, 201, 217, 219, 222, 223, 225, 226, 229, 230, 232 grave robbing 37 gribble, karleen 5, 296, 323 guadalajara (city in mexico) 269 h haimes, erica 7, 11 hamdy, sherine 266, 267 hardt, michael 12, 13 hart register 146 hau 255 hausman, bernice 296, 320, 325, 331 havasupai, native american tribe 70 health and social care act (2012) 281 healthism 21, 224, 226 healy, kieran 8, 14 heart damage 221 recipients 219, 221–224, 227, 233 transplant 221, 222, 229 valve transplant 249 hela cell line 11, 66, 79 hepatitis c 295, 327 hereditary motor and sensory neuropathy (hmsn) 101 heteronormativity 308 hiv/aids 326, 329 hochschild, arlie 12, 14 hoeyer, klaus 39, 53, 192 hope 13, 69, 91, 95, 100, 105, 156, 194, 200, 203, 204, 228 hormone therapy 300 human assisted reproductive technology act (hart) 117, 119, 145, 146 human embryonic stem cells (hescs) 16, 47, 95 human fertilisation and embryology act (1990) 45 human milk distribution 293, 308, 310, 320, 324, 325 donated 22 donors 5, 23, 292, 320 exchange 292 expressed 5, 299 fortification 293, 294 human milk banking association of america (hmbana) 293 materiality 296 medicalisation 296 networks 15 pasteurisation 293, 296, 326, 327 products 293 providers 292, 300, 306 sale 292 screening 15 sharing, informal 5, 22, 23 www.ebook3000.com

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storage 293, 324 testing 171 human milk 4 human babies 320 human rights 146, 172, 174, 177 humanity, definition of 157 humanness actual 155 potential 155 huntington’s disease 42 hyderabad (city in india) 92, 95, 98 i identity right to 117 illness trajectory 232 immaterial labour 4, 10, 13 immunosuppression 215, 217, 218 in vitro fertilisation (ivf) 19, 115 india 15, 18, 90–92, 96–101, 106, 107, 169, 197, 198, 200 induced pluripotent stem cells (ipscs) 17, 49, 63, 95 inequality of access 267 informal care-giving 275 informed consent 9, 17, 18, 38, 52, 63–65, 70, 71, 76, 81 informed decision making 174, 179 inhorn, marcia 13, 100 institute for plastination 39, 40 instituto mexicano de seguro social (imss, mexican institute of social security) 269 index 349 insurance 180 intellectual property 17, 67 intended baby 170, 172, 174, 175, 177, 179, 180 best interests of 169, 177 intended parents 166, 193 intensive care 22 intensive care unit (icu) 22, 103 intercorporeal 325 intergenerational transfer of gametes 147 international registry in organ donation and transplantation 242 international summit on transplant tourism and organ trafficking 242 internet technologies 5 interpretative phenomenological analysis (ipa) 220 intracytoplasmic sperm injection (icsi) 143 italy 145 ivf baby 145 ivf clinics 142 ivf cycle 143 iwi 118 j johannesson, liza 202 johns hopkins hospital 61 jonsen, albert r. 221 julyna (cervical cancer awareness campaign) 305 instituto de seguridad y servicios justice 126 sociales de los trabajadores de estado (issste, institute of social security and services for civil servants) 269 distributive 243 k karakia 254, 255

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350 index keim, sarah 325 kidney 20, 191, 203, 227 recipients, prospective 21, 219, 220, 228, 230, 231 transplant 203, 220, 227–229 kierans, ciara 22, 216, 232 kleinman, arthur 93 kroløkke, charlotte 3, 11, 14, 21, 192, 197 l laboratory routines 142 technicians 143 lacks, henrietta 11, 61, 82 lactation consultant 5 lactational heredity 295 la leche league 295, 324 lee, robyn 291, 311 legal mother 128 legal rights 131, 177 lesbians 118, 158, 205 levinas, emmanuel 308, 311 levi-strauss, claude 266 life support, withdrawal of 248 life style choice 321 limb-girdle muscular dystrophy (lgmd) 90 'liquid gold' 23, 319, 331, 337 liver disease 224–226 recipients 219, 220, 225, 226, 233 transplant 216, 220, 224, 225, 227 lock, margaret 3, 4 lundin, susanne 3, 11, 15 lungs 20, 245, 247, 249 transplant 20, 243 m macdonald, trevor 23 maharashtra (state in india) 89 māori culture 254, 255 māori donor family 253 māori world views 120 marae 253, 255, 257 market economy 294 maternity maternal body 201, 202, 291, 299, 309, 311 maternal labour 292 maternity clothing 165 mauri 255, 256 mauss, marcel 7, 216 medical tourism/travel 11, 15, 18, 100 medolac 10 mental illness 70, 171 mexico 22 microbiome 322 middle east 100, 104 milk bank (human) 10 milk kinship 328 milk sisters 323 mitchell, robert 4, 70 moore, john 10, 40, 69 morality complicity 42, 44 debate 16 decision making 244 frameworks 243 justice view 243 responsibility 21 status 16, 19, 35, 49, 53 traditional 244 value 38, 44, 48 moral motherhood 337 www.ebook3000.com

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moral work objects 19 mother-child bond 201, 298 motivation 8, 10, 11, 17, 69, 72, 167, 169, 171, 178, 293, 300, 306, 336 'movember' (prostate cancer aware- ness campaign) 306 mumbai (city in india) 89, 92, 95, 98, 103 munter, dan 196 murder 37 murphy, elizabeth 15, 321 muslim people 256 n national blood service (uk) 328 national health service 22, 281 national institute of clinical excellence (nice) 326 national organ transplant act (1984) 24 national service framework for renal services (nsf) 279 nazi atrocities in europe 62 necrotising enterocolitis (nec) 322 neoliberalism 194, 196, 206, 321 neoliberal welfare state 272 neonatal intensive care unit (nicu) 320 neonatologist 295, 326, 329, 330, 333 neurological wards 90 newcastle egg sharing for research scheme (nesr) 7 new england journal of medicine 43 new zealand human rights commission 146 new zealand ministry of health 321 index 351 next of kin 248 non-maleficence 243 northern europe 293 novas, carlos 5, 10–12, 14, 204, 267 nuffield council of bioethics 24 o objectification of foetus 179 of women 176 obstetrician 172, 174 online parenting groups 302 operating theatre 246, 251 organ death 47, 249, 254 organ donation coordination 247, 250 deceased person 242 ethics of 243, 244, 257 history of 243 living organ donation 242 living-related kidney donors 22, 268 living-related organ donors 270, 277 moral aspects of 243 multiple 247 organ donation new zealand (odnz) 242, 249, 258 processes 4, 7, 244, 249 refusal 256 specialist knowledge 250 organs buying and selling 309 deceased donors 242, 244, 270, 281, 336 donors 15, 122, 191, 232, 241, 244, 246, 249, 250, 252, 253, 271

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352 index recipients 202, 203, 216, 219, 231, 232, 241 rejection 227 removal 206, 255 retrieval 251, 252 scarcity 22, 217, 221, 244 trafficking 191, 242 transplantation 4, 7, 19–22, 191, 215, 216, 218, 219, 222, 224, 243, 266, 272, 280, 281 other-oriented 334 p pain relief medication 100 palliative measures 240, 242 pande, amrita 15, 191 parentage, legal 180 parenthood 42, 168, 171 parenting 116, 121, 125, 127, 131, 133, 297, 299, 300, 302, 303 parkinson’s disease 41 parry, bronwyn 3, 11, 192, 275 pasteurisation 325–327, 329, 335 patient advocacy 99, 104 interests of 167, 172, 180, 278, 281 rights activism 144 welfare 177 peer-to-peer milk sharing 5, 22 persistent vegetative state 241 personhood 118, 153, 157, 216 petersen, michael nebling 3, 21, 100, 190, 199, 321, 337 pharmaceutical companies 18, 74, 80, 274, 309 philanthropy 292, 305, 306 philosophy 4, 7 planned parenthood 42 plastinates, status of 36, 39, 40, 53 plastination 36, 38–41 plastination technicians 36, 40 'playing god' 161 poroporoaki 255 post-biological existence 40 post-menopausal implantation 145 post-mortem physical existence 39 powhiri 255 pregnancy 20, 21, 43, 116, 125, 127, 131, 154, 155, 159, 165, 167, 170, 172–174, 178, 179, 190, 194, 197, 203, 204, 325, 327, 332 pregnancy health 20 preimplantation genetic diagnosis (pgd) 146 premature birth 335 prenatal abnormality 174, 175 conditions 127 examination 172 screening 174 primitive streak 46, 48 private/public sphere 192, 193, 197, 216 professionalism 13, 14, 19, 20, 81, 149, 151, 160, 166, 177–179, 181 professional codes of conduct 160 professional identities 141 professional model of surrogacy 181 professional principles 62 prolacta 10, 293, 294, 310 www.ebook3000.com

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pro-life groups (usa) 42 proto-cadaver 51–53 pune (city in india) 92 q quality adjusted life years (qalys) 280 quality of life 101, 102, 227, 230 r rapp, rayna 102 reciprocation 7, 167, 217–219 regenerative labour 10, 191 regenerative medicine 16, 95, 98 reimbursement 168, 293, 294 remuneration 8, 43, 178, 291, 293, 308, 309 reproduction cloning 80 freedom 142 history 144 intent 132, 193, 194 labour 10, 19, 22, 194, 199 material, disposal of 156, 191 medicine 144, 154, 160, 193 rights 125, 193, 194, 198, 199, 205 reproscape 13, 15, 19 respect 6, 17, 21, 38, 45, 47, 48, 52, 94, 153, 156, 179, 231, 233, 254, 256, 257 responsibility 20, 121, 126, 158, 159, 196, 223, 244, 279, 292, 297, 307, 311 resuscitation 245 reykjavik (city in iceland) 190 index 353 risk 5, 23, 43, 81, 107, 166, 169, 170, 177, 190, 198, 218, 265, 272, 296, 297, 309, 319 management 321 encounters 301 robert, julie 121, 160, 292, 304–306 rose, nikolas 3, 5, 6, 9, 10, 12, 14, 193, 194, 201, 204, 205 rudin, ernst 65 s sacrifice 42, 167, 197, 205, 277, 308, 325 sahlgrenska hospital 202 scars, surgical 245 scheper-hughes, nancy 191, 267 science and technology studies (sts) 5 scientific research 65, 68, 81, 82, 144 scientists 11, 13, 19, 20, 51, 63, 78, 141–143, 146–149, 151, 152, 155, 157–160, 204, 217 scoliosis 101 screening 9, 125, 126, 175, 181, 195, 241, 293, 294, 296, 307, 324, 326, 327, 329, 333 scripts 14, 193, 197, 200, 207 sears, william and martha 297 secretaria de salubridad y asistencia (ssa, the ministry of health and welfare) 270 sedatives 240 self-consciousness 48 self-esteem 171 self-interest, motivation for surrogacy 52, 69 self-pity 228 self-recrimination 224

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354 index self-sacrifice 15, 167, 197, 205 sentience 243 serologic testing 247 sharing economy 23, 292, 310 sharp, lesley 215, 218, 220, 221, 226, 227 siminoff, laura 218, 250 skitolsky, lissa 292, 298, 307–310 slavery 174, 295 smith, julie 220, 294 social capital 243, 305, 310 social contracts 217, 219 social ethic 257 social insurance 270–272 social marketing 294–296 social maternity 23, 305, 309, 311 social responsibility 196, 244 solidarity 9, 14 somatic cells 17, 63, 95 somatic cell nuclear transfer (scnt) 49 somatic ethic 12, 22 south africa 37, 165, 293, 326 spain 14, 15, 242 sperm donation 128, 129, 144 spinal cord injury 95 sque, magi 217 stability, emotional 252 state medical ethical council, the (smer) 196, 204 stearns, cindy 222 stem cells hospitals 90 research 4, 16, 18, 46, 73, 75, 90–92, 94, 96, 97, 101, 106, 294 therapies 18, 90–92, 95–100, 103–107 travel 12, 18 sternotomy 247 stigma 226 strathern, marilyn 266 surplus embryos 19, 47, 115, 116, 119, 129 surrogacy 20, 118, 165–176, 178, 180, 181 altruistic 165–167, 169, 176, 196, 198, 200, 204, 205 career 166 commercial 20, 165, 166, 169–176, 180, 190, 191, 193–200, 206, 208 commercial agencies of 166, 171, 172, 175, 199 commodification, objection to 180 communities 173 compensated 20, 166, 168, 176, 181 contractual model of 169, 170, 175 ethics of 195 fees 179–181 legislation 165 licensed clinics 179, 181 professional model 176, 179–181 prohibition 20, 165, 168, 173 unpaid 165, 168, 176, 178 surrogate mothers agency of 171, 179, 199 'good' 165, 168, 176, 197 health of 20, 166, 170 registration 179, 181 rights of 20, 172, 175, 176, 178, 179, 196 selection of 176, 178, 179 surveillance 296 www.ebook3000.com

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index 355 svenaeus, fredrik 221, 227 swanson, kara 5, 292, 295, 307, 308 swazey, judith 7, 191, 216, 217 sweden 21, 189, 190, 196, 199, 202, 208 trustworthiness 169, 170, 177, 178, 325 tūpāpaku 254, 255 tuskegee syphilis controversy 65 'tyranny of the gift' 217 t tapu violation 255 tavakoli, aran 23, 310 technological cultures 265, 279 thailand 169 thingification 192 thompson, charis 11, 12, 93, 95, 104, 120, 145, 253 tikanga 120 tissue biopsy 74 tissue typing 247, 267 titmuss, richard 7, 8, 191 tobacco 176 totipotency 49 transgender father 23, 292 transgender men 203, 298, 300, 304 transplantation u uk medical research council 144 ultrasound 173 unicef 321 unconditional love 175 'under the table' payment 165, 168 united kingdom association for milk banking (ukamb) 293 united nations convention of the rights of the child 180 useless suffering 308 us food and drug administration (us fda) 324 uterine exchange 21, 190–192, 206, 207 uterine transplantation (ut) 190–195, 200–208 uterine transplantation project (utx) experience 21, 218–220, 223–227, 190, 195, 200–202, 205, 208 229, 231–233 medicine 215, 266–270, 272–274, uterus, loss of 170, 201 utilitarianism 243, 252, 299 277–279, 281, 282 technologies 21, 191, 193 waitlist 219, 220, 229 trauma 242, 246 treatment withdrawal 240, 248 trophectoderm 47 trophoblast 47 truog, robert d. 240, 250 trust 66, 74, 76, 82, 126, 150, 178, 180, 256, 298, 302, 311, 335 v vaccines 42 vadodara (city in india) 92 value biostatistical 267 economic 10, 11, 192, 267, 307 exchange 267, 276 parasitic 276 quantifiable 267, 280

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356 index surplus 9, 22, 268, 271, 275, 277 use 275, 276 varela, francisco 215, 216 venereal disease 176 ventilation 246, 247 ventilators 245, 249 viable embryos 150, 151 viral fluid 320 vitality 6, 9, 10, 12, 13, 21, 277 voluntarism 7, 217, 306 volunteering 305 vulnerability 15, 178, 181, 265 w waiata 254 wairua 255 waitemata district health board 255 waldby, catherine 3, 4, 9–12, 15, 70, 191, 201, 267, 275 war crimes 62 waring, marilyn 294 waste 6, 10, 154, 203, 206, 222, 303, 310, 334 wellington hospital, new zealand 320, 329 wet-nursing 295, 304, 322 whaikorero 255 whakapapa 118, 121, 132, 255 whānau 240, 255 whangai 132 women’s health 174, 296, 308, 309, 322 women’s labour 20, 176, 292, 297, 307, 310 work 5, 9, 10, 12, 19, 20, 39, 64, 71, 73, 78, 82, 91, 93–95, 99, 101, 102, 104, 122, 133, 141, 142, 146, 148, 151–153, 158–160, 176, 177, 181, 191, 192, 197, 199, 200, 202, 203, 207, 228, 229, 232, 245, 250, 265–268, 270, 271, 273, 274, 276, 278, 281, 292–294, 299, 330, 331 work practices 20, 141, 142, 153, 270 world health organisation (who) 202, 321 world view 255, 266 x x-ray 245, 247 y yuk factor 296, 325 z zeiler, kristin 3, 146, 160, 233 zelizer, viviana 11, 12 www.ebook3000.com