The Tyranny of the Gift: Sacrificial Violence in Living Donor Transplants

Medical anthropology can bring to living donor transplant useful insights on the nature of gifting, family obligations, reciprocity and invisible sacrifice. Whereas, ethical reflections and debates on the marketing of tissues and organs, especially sales by living strangers, have proliferated to the point of saturation, the larger issue of the ethics of ‘altruistic’ donation by and among family members is more rarely the focus of bio-ethical scrutiny and discussion today, though of course it was much debated in the early decades of kidney transplant. As the proportion of living over deceased donors (especially of kidneys) has increased markedly in the past decade, the time is ripe to revisit the topic, which I shall do via three vignettes, all of them informed by my 10 years as founding Director of Organs Watch, an independent, university-based, anthropological and ethnographic field-research and medical human rights project.Whereas living-related (altruistic) and living-unrelated (commercial) donation are often treated as very different phenomena, I will illustrate what social elements are shared.In both instances, paid kidney sellers and related donors, are often responding to family pressures and to a call to ‘sacrifice’. Medical anthropology can bring to living donor transplant useful insights on the nature of gifting, family obligations, reciprocity and invisible sacrifice. Whereas, ethical reflections and debates on the marketing of tissues and organs, especially sales by living strangers, have proliferated to the point of saturation, the larger issue of the ethics of ‘altruistic’ donation by and among family members is more rarely the focus of bio-ethical scrutiny and discussion today, though of course it was much debated in the early decades of kidney transplant. As the proportion of living over deceased donors (especially of kidneys) has increased markedly in the past decade, the time is ripe to revisit the topic, which I shall do via three vignettes, all of them informed by my 10 years as founding Director of Organs Watch, an independent, university-based, anthropological and ethnographic field-research and medical human rights project. Whereas living-related (altruistic) and living-unrelated (commercial) donation are often treated as very different phenomena, I will illustrate what social elements are shared. In both instances, paid kidney sellers and related donors, are often responding to family pressures and to a call to ‘sacrifice’. David Biro, ‘Silent Bonds’, 1998 As the proportion of living over deceased donors (especially of kidneys) has increased markedly in the past decade, the time is ripe to revisit the topic, which I shall do via a critical medical anthropological reflection informed by my 10 years as founding director of Organs Watch, an independent, university-based, anthropological field-research-based, medical human rights project (1Scheper-Hughes N The global traffic in organs.Curr Anthropol. 2000; 41: 191-224Crossref PubMed Scopus (421) Google Scholar,2Scheper-Hughes N Rotten trade: Millennial capitalism, human values, and global justice in organs trafficking..J Hum Rights. 2003; 2: 197-226Crossref Google Scholar) (http://sunsite.berkeley.edu/biotech/organswatch/). Whereas living-related (altruistic) and living-unrelated (commercial) donation are often treated as very different, even contradictory, phenomena, I will show what social elements are shared, in particular, the role of family pressures and to a call to ‘self-sacrifice’. In a chilling essay (3Biro D “Silent bond”, New York Times Sunday Magazine, October.. 1998; 11 (All quotes cited are from this opinion piece.): 94Google Scholar) followed by an book length memoir (4Biro D One hundred days: My unexpected journey from doctor to patient. Vintage, New York2001Google Scholar) of his encounter with Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood disease destroying his blood cells, David Biro explained why he felt that any one of his sisters should unhesitatingly offer themselves as blood marrow donors. ‘That is what families are supposed to do’, the young doctor stated, even mildly dysfunctional families like his in which the older brother and his baby sister were, before and after the donor transfer, virtual strangers to each other. Biro describes his younger sister, his future donor: ‘My day to day knowledge of Michele was curiously incomplete...We rarely talk about anything deeper than a movie or a meal...I loved her in the distracted way you love a person whose external data are familiar but whose internal workings are a pleasant mystery...[but] now I needed her.’ (All quotes are from ‘Silent Bond’, 1998:94.) Biro felt justified in putting his younger sister’s life—the one whose near perfect genetic match turned out to be David’s ‘jackpot’ number—and her mobility on hold indefinitely. A free spirit who had trekked across the Yukon and worked with disabled children in rural Guatemala, Michelle interrupted her life and her travels to serve her brother’s medical needs. Although a vegetarian, she agreed to eat plenty of red meat and sing the praises of a slab of Canadian bacon. The possible risks to the donor (5Confer DL Leitman SF Papadopoulos EB et al.Serious complications following unrelated donor marrow collection: Experiences of the national marrow donor program.Blood. 2003; 102: 490Google Scholar)—excessive pain, delayed or prolonged recovery, anesthesia reactions, injury to tissue, bone or nerves were never mentioned. This scenario fits the normative transplant discourse in which gifting and altruism are assumed among close friends and kin. It is what any one of us would hope for ourselves were we in the same predicament, either as donor or recipient. But Michelle’s donor role was not over after the transplant. Now that ‘she had literally become a part of me’, Biro wrote that he wanted to keep her close by him in the event he might suffer a relapse that would require more of her marrow. He admitted to feeling resentment whenever his sister spoke of plans for far-flung journeys and he demanded that she cancel a trip to Alaska. Michelle, the silent and invisible object lesson in this medical parable, quietly acquiesced, or so we assume. Biro saw his medical needs as an automatic future claim over his sister’s body, which sustained him physically and psychologically. Hegel might have referred to this arrangement as a master–slave dialectic, marked by mutual dependencies and invisible violence and sacrifice. At the close of his essay Biro boasts that he never thanked his sister because ‘to do so would have violated the pact of silence that brothers and sisters feel compelled to uphold’. This ‘pact of silence’ is what anthropologists call a ‘public secret’, something known by all but unstated because of the extreme fragility of the social situation. Here the ‘secret’ concerns fairly primitive blood claim by one sibling on the other. A living donor in Brazil said that her surgeon had extracted a similar promise that she never speak of her gift within the family as it would be unfair to the recipient. The gift must be invisible, thus maintaining a ‘family myth’ capable of erupting later on. Biro’s memoir was highly praised as ‘the work of a doctor who has the soul of a “poet”’. There is no mention in the reviews of David’s donor, illustrating my point that living donors are almost as invisible as deceased ones. Both are faceless ‘suppliers’ of a scarce commodity. Over time the transplant experience was reduced ‘to a wisp of memory’ as each moved on in their lives. Biro went back to ‘not knowing Michelle and she to not knowing me’. This narrative speaks less to family bonds than to family bondage, less to gifting than to poaching. If Biro’s sister had been the patient, would David have interrupted his active life and put his body on the line to serve her needs? International data indicate a gender bias in living donation, with females the more likely donors (6Biller-Andorno N Gender imbalance in living organ donation.Med Health Care Philos. 2002; 5: 199-204Crossref PubMed Google Scholar, 7Khajehdehi P Living non-related versus related renal transplantation—its relationship to the social status, age and gender of recipients and donors.Nephrol Dial Transpl. 1999; 14: 2621-2624Crossref PubMed Scopus (27) Google Scholar, 8Kayler LK Rasmussen CS Dykstra DM et al.Gender imbalance and outcomes in living donor renal transplantation in the United States.Am J Transpl. 2003; 3: 452Abstract Full Text Full Text PDF PubMed Scopus (99) Google Scholar, 9Ojo A Port FK Influence of race and gender on related donor renal transplantation rates.Am J Kidney Dis. 1993; 2: 835-841Abstract Full Text PDF Scopus (56) Google Scholar, 10Zimmerman D Donnelly S Miller J Stewart D Albert SE Gender disparity in living renal transplant donation.Am J of Kidney Dis. 2000; 36: 534-540Abstract Full Text Full Text PDF PubMed Scopus (92) Google Scholar). The Organs Procurement and Transplantation Network (OPTN) lists 2299 (living) females and 1637 males who have donated organs in 2006; the gender gap is greater for other years. Wives are far more likely than husbands (36–6.5% in one survey) to donate a kidney to a spouse (8Kayler LK Rasmussen CS Dykstra DM et al.Gender imbalance and outcomes in living donor renal transplantation in the United States.Am J Transpl. 2003; 3: 452Abstract Full Text Full Text PDF PubMed Scopus (99) Google Scholar, 10Zimmerman D Donnelly S Miller J Stewart D Albert SE Gender disparity in living renal transplant donation.Am J of Kidney Dis. 2000; 36: 534-540Abstract Full Text Full Text PDF PubMed Scopus (92) Google Scholar). In Iran under a government regulated system of paid donation, women are the primary paid donors and men the primary receivers of those purchased organs (7Khajehdehi P Living non-related versus related renal transplantation—its relationship to the social status, age and gender of recipients and donors.Nephrol Dial Transpl. 1999; 14: 2621-2624Crossref PubMed Scopus (27) Google Scholar). Rather than celebrate the ‘altruism’ of women worldwide, we ought to be paying attention to the social pressures exerted on them to be living donors. A pediatric transplant surgeon in Brazil explained the excess of female donors in his clinic: ‘It is only natural that mothers are the donors within families. I tell [fathers] that the mother has already given life to the child, and now it is his turn. But most men feel that organ donation is a womanly thing to do’. 1Anthropologists are honor bound by our professional ethics to conceal the names of our research informants if they request to remain anonymous, as in this case. A transplant surgeon in Recife, Brazil, stated that mothers were the preferred family kidney donors on the grounds of tissue compatibility. You always knew who the biological mother was, while biological fathers were uncertain. Anthropologists entertain different assumptions than physicians about the nature of families, altruism, gifting, and human sacrifice. Families are often violent and predatory, as inclined to abuse and exploit as to protect and nurture their members. Gifts are never ‘free’; they inevitably come with strings, making the recipient beholden in crucial ways (11Mauss M The gift. W.W. Norton, New York1967Google Scholar). Every gift is both altruistic and indebting, spontaneous and calculated. Gifts demand counter-gifts, even though time may elapse and the return gift may or may not be in kind. Pure altruism does not exist, except perhaps toward one’s children, and bio-evolutionists would point out that parental sacrifice hides another sort of (genetic) self-interest. Organ capture within families involves an intensely private dynamic that often escapes the most careful medical professionals. In societies characterized by a high degree of male dominance pressure is frequently exerted on lower status, poorer, female relatives to ‘volunteer’ as donors. The tendency is to choose the least valuable, least productive family member, the unemployed single maiden aunt, for example. A spinster teacher from a small town in Brazil was ‘nominated’ by her siblings to be a kidney donor to her younger brother. ‘Zulaide’ agreed but she resented the imposition. To make matters worse the transplant failed; her kidney was rejected and her brother died. When Zulaide suffered from vague symptoms attributed to her nephrectomy, her complaints were dismissed by the transplant surgeon as ‘neurotic’, as ‘donor regret’, as a kind of ‘compensatory neurosis suffered by a childless woman who never succeeded in anything in life, not even in being a donor’. The remark revealed the physician’s barely concealed contempt for this low status female. During a meeting of the Bellagio Task Force on organs trafficking (12David R Rothman DJ Rose E Awaya T The Bellagio Task Force report on transplantation, bodily integrity, and the international traffic in organs.Transpl Proc. 1997; 29: 2739-2745Google Scholar) Abdullah Daar argued that kidney selling would actually protect low status women in the Middle East from being coerced to serve as altruistic family donors. In the early decades of transplant physicians were cautious about living donors, realizing that relatives of the sick were often under pressure to donate. Thus, they went out of their way to protect designated donors from having to do so, often providing them with a medical alibi even though this went against their own desires to see their patient transplanted. One surgeon, cited by Fox and Swazey (1978: 386) believed that living donation involved such a degree of interdependence and over-identification between donor and recipient that it ought to be a taboo, similar to the incest taboo. That caution has evaporated as living donor transplant became routine. In some societies, like Japan, where the demands of gift giving are very elaborate, individuals fear being the recipient of a large and impressive gift that can humiliate the receiver who has no possibility of repaying it (13Margaret L Twice dead: Organ transplant and the reinvention of death. University of California Press, Berkeley2002Google Scholar). Fox and Swazey (14Fox R Judith S Spare parts. Oxford University Press, New York2002: 40Google Scholar) first referred to the ‘tyranny of the gift’ to describe the onus of organs gifting: ‘The gift the recipient has received from the donor is so extraordinary that it is inherently unreciprocal. It has no physical or symbolic equivalent. As a consequence, the giver, the receiver, and their families may find themselves locked in a creditor-debtor-vise that binds them to each other in a mutually fettering way.’ The gift-giver may lord it over the recipient and may feel proprietary toward the recipient of their largesse. In my OrgansWatch files are examples of the following: a father who gave his a kidney to his even and his love a to her younger brother to his or out to where was because it might a donor who the of her to a the of the person whose life she had In each the donor not but a kidney to the patient. paying a for a kidney can to the A young woman who to in where she was with a kidney purchased from a said she had so to a to serve as her donor: from own like you him life, so always a always like a on If I would have to see my donor I would have to be him all the time and that would be I to see the of the kidney so that I would never have to about him I paid for He kidney to the same as if it were a the of an organ a the of to the is But as I describe family pressures and sacrifice are even in the of kidney and In both and paid family members are to sacrifice themselves in the of the family In the of a of active kidney I on a The to a kidney to for one’s family on male of Over kidney selling became and as a of the to which a and father would to protect his a return to in was and by David for in with Scholar) as part of a I more among young men and even who had about their age to be as paid donors in and private was by his a kidney the him that father and his older brothers had already a The kidney never large families out of was his mother him to a kidney so she the of and she out of her A not his Kidney selling had become a of among and a kidney across the of a was as as a large as in a the across the and family the to his the social involved in kidney selling may from normative of altruistic kidney donation, I that are of family and within both of living donation, related and My scenario the most The of in over years has increased markedly over the past As the and as transplant has become older are the of life that a transplant can In the United with highly of is a to the from the of and their physicians are to are the renal transplant J is for J Transpl. Full Text Full Text PDF PubMed Scopus Google Scholar). As of 10 over are for an A in a kidney from a deceased donor a patient. In some of and the United the demand has been by organs, referred to as organs A for organ for organ and for organ Transpl. 2003; PubMed Scopus Google Scholar). are ethical in so organ a kind of social justice and a social the the of younger organs for is more an in living donation by children and for their and the to over in were from living donors and from children of the in their and gave to in their and ethnographic by the S A J and 2006; are from PubMed Scopus Google Scholar) a which children were by transplant to donate to their This a in where it is not that children be to their something that of from were to are to to their children D A University of Press, Scholar). 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I if not a a of the of living donors, especially young ones. My concerns are not with the medical risks of living donation but with the less social and it the of transplant and require the of the medical and who even more than are the the of transplant is a to David the A of and Medical New in the would that deceased donors can never are to the to see if in be and to age that would the by so, would put more pressure on living donors to loved and on very sick or very to for or to in a by medical or living and deceased donation each other and of have to be are not always Rather than find ways to or honor living donors we to the to deceased the of the of and we ought to that have worked in the of organ transplant as a social in which no one is or on the of their to Living donation, should be to a back as an to deceased and for this project was from the New York and the University of This essay was while the was a the for

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