Abstractabstract:This article provides an in-depth ethical analysis of living donor uterus transplantation, incorporating clinical, psychological, and qualitative study data into the discussion. Although the concept of living organ donors as patients in their own right has not always been present in the field of transplantation, this conceptualization informs the framework for living donor ethics that we apply to living uterus donation. This framework takes root in the principles of research ethics, which include respect for (...) persons, beneficence, and justice. It incorporates an analysis based on eight potential vulnerabilities of living donors: capacitational, juridic, deferential, social, medical, situational, allocational, and infrastructural. Finally, it recognizes that special relationships—such as that of the living donor advocate with the potential donor—require special responsibilities, including identifying vulnerabilities and engaging donors in a shared decision-making process. Directed and non-directed uterus donors require separate ethical analyses because their different relationships with recipients will influence the types of vulnerabilities, they are subject to as well as the potential benefits they may gain from donation. (shrink)

This essay considers the issue of informed consent as it arose in the context of 1960s living kidney donors. In one of the earliest empirical inquiries into informed consent, psychiatrists Carl H. Fellner and John R. Marshall interviewed donors about their decision‐making process and their experience and reflections on donorship. In their much‐cited 1970 paper, the physicians reported that living donors, rather than reaching a reasoned, intellectual, and unemotional decision about donating a kidney (as stipulated in the Ethical (...) Guidelines for Organ Transplantation issued by the American Medical Association's Judicial Council), instead made instantaneous and “irrational” decisions about participation. Fellner and Marshall's studies contributed to the public debate and professional discussion about the moral and ethical dimensions of donorship, even as they challenged the developing consensus on informed consent. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Narrative Symposium:Living Organ DonationLaura Altobelli, Sherri Bauman, Janice Flynn, Andy Heath, Joseph Jacobs, Tim Joos, Amy K. Lewensten, Donna L. Luebke, Sarah A. McDaniel, Donald Olenick, Laurie E Post, Vicky Young, Blake Adams, Anonymous One, Michael Sauls, Christine Wright, Shannon D. Wyatt, and Cara Yesawich• An Altruistic Living Donor’s Story• Surgery for the Soul• Kidney Donation Story• The Essence of Giving—A Transplant Story• Love—the Risk Worth (...) Taking• My Donation Journey• A Life For A Life: My Gift To My Dad• Lessons Learned: The Realities of Living Organ Donation• Sarah’s List Exchange Experience• Accelerated Living Donation• Liver Donor Nightmare• Adrift After Donation• Getting Our Child Off Dialysis• A Living Donor’s Journey• The Spare Kidney• Living Donors are People Too• The Gift of Life—Walking by Faith• Journey of an Altruistic, Non–designated Living DonorCopyright © 2012 The Johns Hopkins University Press... (shrink)

The world’s first living donor liver transplant from an HIV-positive mother to her HIV-negative child, performed by our team in Johannesburg, South Africa in 2017, was necessitated by disease profile and health system challenges. In our country, we have a major shortage of donor organs, which compels us to consider innovative solutions to save lives. Simultaneously, the transition of the HIV pandemic, from a death sentence to a chronic illness with excellent survival on treatment required us to (...) rethink our policies regarding HIV infection and living donor liver transplantation. Although HIV infection in the donor is internationally considered an absolute contraindication for transplant to an HIV-negative recipient, there have been a very small number of unintentional transplants from HIV-positive deceased donors to HIV-negative recipients. These transplant recipients do well on antiretroviral medication and their graft survival is not compromised. We have had a number of HIV-positive parents in our setting express a desire to be living liver donors for their critically ill children. Declining these parents as living donors has become increasingly unjustifiable given the very small deceased donor pool in SA; and because many of these parents are virally suppressed and would otherwise fulfil our eligibility criteria as living donors. This paper discusses the evolution of HIV and transplantation in SA, highlights some of the primary ethical considerations for us when embarking on this case and considers the new ethical issues that have arisen since we undertook this transplant. (shrink)

Research teams have made considerable progress in treating absolute uterine factor infertility through uterus transplantation, though studies have differed on the choice of either deceased or living donors. While researchers continue to analyze the medical feasibility of both approaches, little attention has been paid to the ethics of using deceased versus living donors as well as the protections that must be in place for each. Both types of uterus donation also pose unique regulatory challenges, including how to allocate (...) donated organs; whether the donor / donor's family has any rights to the uterus and resulting child; how to manage contact between the donor / donor's family, recipient, and resulting child; and how to track outcomes moving forward. (shrink)

The ethics committee of the University of São Paulo Medical College Hospital and Clinics has authorized partial liver transplantation from living donors. The request for this type of transplantation was brought to the committee by a team of professors of surgery operating at the university, headed by Dr. Silvano Raia. Their request and justification are presented here, with discussion following.

In lieu of an abstract, here is a brief excerpt of the content:Gifts and Obligations: The Living Donor as StorytellerPaul Root WolpeThe Illness NarrativeEach of us lives with an inner biographical narrative, the story we tell ourselves about ourselves, the story that becomes our account of who we are. It is the story we have constructed about our life and its meaning, built from memories of our past—our childhood, our parents, our friends, our experiences. We construct that story (...) through our subjective experience and memories of our past, bringing together the disparate parts of our lives and weaving them into a coherent whole by which we make sense of ourselves.Under the pressures of the advent of sudden illness, or in the face of chronic illness that becomes a dominant status, “individuals often feel a pressing need to re-examine and re–fashion their personal narratives in an attempt to maintain a sense of identity” (Bury, 2001, p.264). Illness forces us to re–imagine our life in the face of often sudden new circumstances. Illness narratives about chronic or lifelong illness are not necessarily about suddenly needing to recast one’s life due to new circumstances, but about the need to understand the way chronic illness positions and defines us in the web of social and institutional relationships.The narratives in this collection might be thought of as a peculiar type of illness narrative. The people who populate these stories are not themselves sick (or at least were not when their stories began); yet they are bound up in the medical world, have had their bodies cut open and pieces removed, have had, at times, problematic recoveries and lasting physical and mental challenges. For that reason, the stories of living donors are particularly interesting in the illness narrative literature, and they raise a unique set of questions. Living donors have not discovered a sudden illness that requires re–imagining their lives, nor are they coping with a long illness that has become a thematic frame for how they conceptualize their world. The key aspect that differentiates the living donors’ narratives from the usual illness narratives is volition; the donors have chosen to enter the world of the infirm, have chosen to subject themselves to surgery and medical management, and have chosen to join their stories to someone else’s—and in so doing to become allied to, and yet never fully a part of, the illness narratives of the recipients.Gifting and OwnershipIf it is true that we tell our stories informed by the other stories of our culture, that we must fit our own stories into the narrative resources available in our particular society, then the living donors need to find a cultural frame to make sense of this strange position they find themselves in: joining the world of the sick and infirm not because of intrinsic illness but, to the contrary, because of their relative health. Almost thirty years ago, Renée Fox and Judith Swazey began their ground-breaking work The Courage to Fail (1974) with a clear [End Page 39] statement of the way in which the donor’s role is understood:The donor who offers a part of his body for transplantation is making an inestimably precious gift. The acutely ill patient who receives the organ accepts a priceless gift. The giving and receiving of a gift of enormous value, we believe, is the most significant meaning of human organ transplantation. The extraordinary gift exchange, moreover, is not a private transaction between the donor and the recipient. Rather, it takes place within the complex network of personal relationships that extends to the families, the physicians, and all the members of the medical team who are involved in the operation. Within the network of these relations, a complex exchange occurs through which considerably more than the organ itself is transferred(p. 5).It is the sociological and psychological power of the idea of the gift that makes transplantation an especially evocative case. Eighteen years later, in their second book about organ transplantation, Spare Parts (1992), Fox and Swazey cite their own quote above and comment about it that “Despite all the biomedical and social changes that have ensued within and around the... (shrink)

A prominent defence of a market in organs from living donors says that if we truly care about people in poverty, we should allow them to sell their organs. The argument is that if poor vendors would have voluntarily decided to sell their organs in a free market, then prohibiting them from selling makes them even worse off, at least from their own perspective, and that it would be unconscionably paternalistic to substitute our judgements for individuals' own judgements about (...) what would be best for them. The author shows that this ‘Laissez-Choisir Argument’ for organ selling rests on a mistake. This is because the claim that it would be better for people in poverty to sell their organs if given the option is consistent with the claim that it would be even better for them to not have the option at all. The upshot is that objections to an organ market need not be at all paternalistic, since we need not accept that the absence of a market makes those in poverty any worse off, even from their own point of view. The author goes on to argue that there are strong theoretical and empirical reasons for believing that people in poverty would in fact be harmed by the introduction of a market for live donor organs and that the harm constitutes sufficient grounds for prohibiting a market. (shrink)

Objectives To investigate risk perception relating to living kidney donation, to compare the risk donors would accept with current practice and identify influential factors. Design An observational study consisting of questionnaires completed by previous living donors and the general public. Participants selected the risk they would accept from a list of options, in various scenarios. Risk communication was investigated by randomly dividing the sample and presenting risk differently. Setting Primary care (two centres) and secondary care (one centre), London. (...) Participants 175 questionnaires were sent to patients who had previously undergone living-donor nephrectomy and to members of the public consulting a general practitioner. The living-donor sample comprised 77 consecutive donors at Guy's Hospital from May 2003 to January 2005. The general-public sample was recruited from two London healthcare centres. Of the eventual 151 participants, 61 were living donors and 90 were from the general public. Main outcome measure The amount of risk a participant would accept to donate a kidney. Results 74% of participants were willing to accept a risk of death higher than 1/3000. The most commonly accepted risk was 1/2 (29%). Those presented with a ‘chance of survival’ accepted higher risks than those presented with a ‘risk of death’ (p<0.01). Greater risks were accepted when the recipient was closely related and, for some, when the recipient's prognosis was worse. No difference was observed between the living-donor and general-public groups. Conclusions Kidney donors will accept a higher risk of death than is currently quoted, especially if risks are presented in terms of chance of survival. (shrink)

Acceptance of elderly or marginal health individuals as kidney donors is debated, with practices varying between centres. Transplant recipients, live kidney donors and health-care professionals caring for patients with renal failure were surveyed regarding their views on live donor kidney transplantation (LDKT) of marginal health (diabetes, hypertension, atherosclerosis, obesity, etc.) and elderly donors. Participants were recruited within a tertiary renal and transplant centre and invited to participate in focus groups and structured interviews. They also completed an anonymous questionnaire. Of (...) 464 participants who completed the questionnaire (36% health-care professionals and 64% patients), 49% and 64%, respectively, stated that marginal and elderly donors should be accepted for LDKT. In the structured interviews, emphasis was given to presenting to donor, recipient and their respective families a calculated risk regarding the effect that either a nephrectomy or transplant has on long-term quality of life. Participants stated that an independent third party in addition to the transplant team should discuss involved risks. Issues of ‘how desperate’ the recipient's situation is should also be considered. Health-care professionals stated that regardless of the strength of will of an individual to donate a kidney (despite age, health problems or personal risk), they should always have the right to say ‘no’ if performing a specific LDKT was against their professional and ethical values. About half of those surveyed considered that marginal health and elderly donors were acceptable for LDKT. Emphasis was given to the explanation to donors and recipients of the risks involved in such transplantation. (shrink)

In 1999, the Bangladesh government introduced the Human Organ Transplantation Act allowing organ transplants from both brain-dead and living-related donors. This Act approved organ donation within family networks, which included immediate family members such as parents, adult children, siblings, uncles, aunts, and spouses. Subsequently, in January 2018, the government amended the 1999 Act to include certain distant relatives, such as grandparents, grandchildren, and first cousins, in the donor lists, addressing the scarcity of donors. Nobody, without these relatives, is (...) legally permitted to donate organs for transplantation in Bangladesh. The focus of this study was to investigate who should donate organs for transplantation in Bangladesh. The ethnographic fieldwork revealed that potential donors are not always available to immediate family members, and even when they are, they might be medically unsuitable for transplants. These considerations influenced the government in the revision of the Act. Secondly, the findings of the study suggest maintaining the current family-based regulations for living organ donation in Bangladesh. Furthermore, the study highlighted a potential consequence: amending the regulation to permit donations to unrelated recipients could significantly amplify the issue of organ selling and buying. While Islam advises Muslims to be compassionate towards all humankind, it also encourages Muslims to prioritize saving the lives of family members. This religious belief limits Muslims from donating organs to family members. (shrink)

Despite the much-discussed court cases in the 1970s that permitted some sibling-to-sibling kidney donations from minors,1 principles that can guide parental, medical, or judicial decisionmaking are neither clearly articulated nor uncontroversial.

ABSTRACT In a Living Donor List Exchange program, the donor makes his kidney available for allocation to patients on the postmortal waiting‐list and receives in exchange a postmortal kidney, usually an O‐kidney, to be given to the recipient he favours. The program can be a solution for a candidate donor who is unable to donate directly or to participate in a paired kidney exchange because of blood group incompatibility or a positive cross‐match. Each donation within an (...) LDLE program makes an additional organ available for transplantation. But because most of the pairs making use of the program will be A/o incompatible, it will also tend to increase the waiting time for patients with blood group O, who already have the longest waiting time. It has therefore been objected that the program is materially unjust, because it further disadvantages the least advantaged. This objection appeals to John Rawls’ difference principle. However, the context for which Rawls proposed that difference principle, is significantly different from the present one. Applying the principle here amounts to a lop‐sided trade‐off between considerations of need and considerations of overall utility. Considerations of formal justice, however, may lead to a stronger objection to LDLE programs. Such a program means that one O‐patient on the waiting list is exempted from the application of the general criteria used in constructing the list because he has a special bargaining advantage. This objection is spelled out and weighed against the obvious attraction of LDLE in a situation of (extreme) organ scarcity. (shrink)

Both living donor transplantation and human subjects research expose one set of individuals to clinical risks for the clinical benefits of others. In the Belmont Report, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research articulated three principles to serve as the basis for a research ethics framework: respect for persons, beneficence and justice. In contrast, living donor transplantation lacks a framework. In this manuscript, we adapt the three principles articulated in (...) the Belmont Report to serve as the foundation for an ethics framework for living donor transplantation which we supplement with the principles of vulnerability and responsibility. The National Commission supported additional protections for vulnerable groups of potential research participants. In 2001, Kenneth Kipnis effectively argued that the concept of vulnerable groups failed to explore in what ways particular groups of people were vulnerable, thereby risking unnecessary protections for some and inadequate protections for others. He proposed a taxonomy that explored different types of vulnerabilities that all research participants may experience to provide a more robust framework for human subjects protections, which we adapt to living donors. Robert Goodin claims that health professionals, who stand in special relationship with patients, are responsible for promoting and protecting their well-being. In living donor transplantation, the donor transplant team is responsible for empowering prospective donors to address their vulnerabilities and/or for protecting those who cannot by disqualifying them from donation. (shrink)

In Mexico, diabetes mellitus is the main cause of end − stage kidney disease, and some patients may be transplant candidates. Organ supply is limited because of cultural issues. And, there is a lack of standardized clinical guidelines regarding organ donation. These issues highlight the tension surrounding the fact that living donors are being selected despite being prediabetic. This article presents, examines and discusses using the principles of non-maleficience, autonomy, justice and the constitutionally guaranteed right to health, the ethical (...) considerations that arise from considering a prediabetic person as a potential kidney donor. (shrink)

In this paper I investigate, from an ethical perspective, the legal prospects of unrelated living donors from Romania. In the present-day shortage of organs necessary for transplantation, the organs from living donors represent an alternative to the organs from deceased ones. Worldwide, unrelated living donors begin to be considered as a promising category among overall living donors. However, their situation raises many ethical questions that need to be addressed by adequate regulations and protections. The paper analyzes (...) the case of non-related living donors applied to the Romanian present situation, in an attempt to underline the ethical limitations their situation presents. (shrink)

Spurred by a severe shortage of cadaveric organs, there has been a marked growth in living organ donation over the past several years. This has stimulated renewed interest in the ethics of this practice. The major concern has always been the possibility that a physician may seriously harm one person while trying to improve the well-being of another. As Carl Elliott points out, this puts the donor's physician in a difficult predicament: when evaluating a person who volunteers to (...) donate an organ, “a doctor is in the position of deciding not simply whether a subject's choice is reasonable … but whether he [the doctor] is morally justified in helping the subject accomplish it.”1 This question has become even more difficult since the introduction of living donor operations that are more risky than living kidney donation and the suggestion that volunteers at added risk may sometimes be acceptable.2 So, how can we decide when the risk is too much? (shrink)

The dominant model for bioethical inquiry taught in medical schools is that of principlism. The heritage of this methodology can be traced to the Enlightenment project of generating a universalizable justification for normative morality arising from within the individual, rational agent. This project has been criticized by Alasdair MacIntyre who suggests that its failure has resulted in a fragmented and incoherent contemporary ethical framework characterized by fundamental intractability in moral debate. This incoherence implicates principlist conceptions of bioethics. Medical ethics as (...) practiced, though, is partially in keeping with teleological alternatives to principlism. Nonetheless, the hegemony of principlism threatens to harm the practice of good medicine whenever it is used to provide justification for the sanction or prohibition of practices, despite not being equipped to grant moral authority to such justifications. An example of this failure and its resulting harm is expressed in the growing obsolescence of living donor liver transplantation. (shrink)

Kidney transplantation is a lifesaving medical treatment. However, very high demand for kidneys with low kidney donation causes a black market that exploits patients’ desperation and donors’ vulnerability. The current kidney donation programs fail to produce promising results to avoid illegal and unethical kidney trafficking and commercialism. Even though the primary goal of kidney donation is to increase the number of deceased organ donations, in some countries, like Turkey, due to religious or cultural concerns, it is impossible to supply adequate (...) deceased kidney donations. In this view, the aim of this paper is to examine kidney trafficking in the scope of Turkey's current organ donation system and propose a new model, named the Incentivized Kidney Donation Model (IKDM), to increase kidney donation from living donors. The model encompasses the following benefits offered to kidney donors; lifetime health insurance, exemptions from copayments/contribution shares, priority when receiving an organ, priority when finding a job, income tax exemptions for salaried employees, and free or discounted public utilities. This normative model has the potential to promote donors’ altruistic acts as well as the solidarity and loyalty among members of a society without violating ethical values and internationally accepted principles. (shrink)

For females without a functioning womb, the only way to become a biological parent is via assisted gestation—either surrogacy or uterus transplantation (UTx). This paper examines the comparative impact of these options on two types of putative ‘womb‐givers’: people who provide gestational surrogacy and those who donate their uterus for live donation. The surrogate ‘leases’ their womb for the gestational period, while the UTx donor donates their womb permanently via hysterectomy. Both enterprises involve a significant degree of self‐sacrifice and (...) medical risk in order to enable another person(s) to become a parent by either providing gestational labour or enabling the other person to undertake gestation themselves. In this paper, we explore the burdens and the benefits from the perspective of the womb‐giver in order to inform ethical debate about assisted gestation. This is a perspective that is often neglected in the bioethical discourse. With both surrogacy and UTx, when success follows the womb‐giver’s sacrifice, the key benefit is delivered to the intending parent(s), but as this article examines, the womb‐giver may also enjoy some unique (relational) benefits as a result of their sacrifice. Ultimately, the choice of how a womb‐giver lends assistance in gestation will impact on their bodily autonomy; some will prefer to carry a pregnancy and others to donate their uterus. We argue that the perspective of the womb‐giver is crucial and thus far has not been afforded sufficient consideration in ethical discussion. (shrink)

For the majority of scholars concerned with the ethics of living organ donation, inflicting moderate harms on competent volunteers in order to save the lives or increase the life chances of others is held to be justifiable provided certain conditions are met. These conditions tend to include one, or more commonly, some combination of the following: The living donor provides valid consent to donation. Living donation produces an overall positive balance of harm–benefit for donors and recipients (...) which cannot be obtained in a less harmful manner. Donation is not liable to cause significant and long-term morbidity to, or the death of, the donor. This paper critically examines the suggestion that these criteria are not sufficient to offer a general account of justified living organ donation in the context of competent volunteers and that key to justified living organ donation is that donors receive sufficient benefits from their donation that these outweigh the harms they suffer. However, although this view—termed here ‘The Donor Benefit Standard’—directs welcome attention to the many and complex motives which may underlie living organ donation, this paper ultimately concludes that given the threats this position poses to individual autonomy and the lives of those in need of organ transplants ‘The Donor Benefit Standard’ should ultimately be rejected. (shrink)

: The past decade has witnessed the emergence of novel methods to increase the number of living donors. Although such programs are not likely to yield high volumes of organs, some transplant centers have gone to great lengths to establish one or more of them. I discuss some of the ethical and policy issues raised by five such programs: (1) living-paired and cascade exchanges; (2) unbalanced living-paired exchanges; (3) list-paired exchanges; (4) nondirected donors; and (5) nondirected donors (...) catalyzing cascade exchanges. I argue that living-paired and cascade exchanges are ethically sound, but will lead to only a few additional transplants. Unbalanced exchanges and list-paired exchanges raise ethical issues that should limit their permissibility. Nondirected donations can be ethically sound with adherence to strict eligibility criteria and fair allocation procedures. Nondirected donors catalyzing cascade exchanges can be ethically sound provided that individuals with blood types O and B are not made worse off. (shrink)

Uterus transplantation (UTx) is an experimental surgery likely to face the issue of organ shortage. In my article, I explore how this issue might be addressed by changing the prevailing practices around live uterus donor recruitment. Currently, women with children – often the mothers of recipients – tend to be overrepresented as donors. Yet, other potentially eligible groups who may have an interest in providing their uterus – such as transgender men, or cisgender women who do not wish to (...) gestate or to have children – tend to be excluded as potential donors. Moving forward, I recommend that donor inclusion criteria for UTx be broadened to be more inclusive of these latter groups. (shrink)

Medical technology assessment deals with the evaluation of novel or existing health care procedures. This paper addresses the interdependence between factual and normative issues, using the controversies about acceptability and desirability of reduced-size liver transplantations with living donors as example.

In debates over the legitimacy of markets for live human organs, much hinges on the moral standing of desperate exchanges. Can people in desperate circumstances genuinely choose to sell their organs? Alternatively if they do choose to sell, then surely is it their choice? While sales are banned in most of the Western world due to fears that the poor will be exploited, advocates of these markets find such prohibition unconscionably paternalistic; and from the standpoint of contemporary liberal theory, paternalism (...) is anathema. Is it possible to provide grounds for blocking such desperate exchanges which are not at the same time paternalistic?In ‘Imposing Options on People in Poverty: the Harm of a Live Donor Organ Market', Simon Rippon argues that some options in the market do in fact harm. According to Rippon, if we focus on possible negative consequences of increasing an agent's options, one can develop an argument against human organ markets which is not paternalistic or focused on the idea of exploitation. Whether his account is, as stated, non-paternalistic is an open question, but his analysis of the implications of increased commercial options provides an illuminating and original critique of the human organ markets.Rippon labels his opponents' view the ‘Laissez-choisir Argument’ . According to LC, blocking exchanges …. (shrink)

The transplant community has faced unprecedented challenges balancing risks of performing living donor transplants during the COVID-19 pandemic with harms of temporarily suspending these procedures. Decisions regarding postponement of living donation stem from its designation as an elective procedure, this despite that the Centers for Medicare and Medicaid Services categorise transplant procedures as tier 3b (high medical urgency—do not postpone). In times of severe resource constraints, health systems may be operating under crisis or contingency standards of care. (...) In this manuscript, the United Network for Organ Sharing Ethics Workgroup explores prioritisation of living donation where health systems operate under contingency standards of care and provide a framework with recommendations to the transplant community on how to approach living donation in these circumstances.To guide the transplant community in future decisions, this analysis suggests that: (1) living donor transplants represent an important option for individuals with end-stage liver and kidney disease and should not be suspended uniformly under contingency standards, (2) exposure risk to SARS-CoV-2 should be balanced with other risks, such as exposure risks at dialysis centres. Because many of these risks are not quantifiable, donors and recipients should be included in discussions on what constitutes acceptable risk, (3) transplant hospitals should strive to maintain a critical transplant workforce and avoid diverting expertise, which could negatively impact patient preparedness for transplant, (4) transplant hospitals should consider implementing protocols to ensure early detection of SARS-CoV-2 infections and discuss these measures with donors and recipients in a process of shared decision-making. (shrink)

This is an excellent article, probably the best there is in defence of prohibiting the sale of organs, and it deserves a much fuller discussion of detail than there is space for here.1 My concerns, however, are with generalities rather than detail. Although some such argument might justify prohibition of organ selling in particular places and at particular times, it is difficult to see how it could support the kind of general, universal policy currently accepted by most advocates of prohibition.Whenever (...) the subject of organ selling is discussed, it is useful to keep in mind the natural history of the debate. Prohibition was instituted by most governments and professional bodies just about as quickly as possible after it was discovered that payment for kidneys was going on, and was a direct response to feelings of moral outrage. It all happened without time for debate. It was only later, as challenges appeared, that justifications began to be produced; and when they did they followed a pattern long familiar to philosophers, and more recently recognised by moral psychologists, of determined efforts to find a justification for the initial intuition that organ selling must be wrong. New arguments kept appearing in the cause as earlier attempts were shown to fail, and many were so weak that they could not have seemed plausible unless their advocates had already been committed to their conclusion. This does not mean, of course, that a good justification could never be produced. It does, however, suggest a widespread feeling that organ selling must be intrinsically …. (shrink)

Liver transplantation is the treatment of choice for many forms of liver disease. Unfortunately, the scarcity of cadaveric donor livers limits the availability of this technique. To improve the availability of liver transplantation, surgeons have developed the capability of removing a portion of liver from a live donor and transplanting it into a recipient. A few liver transplants using living donors have been performed worldwide.Our purpose was to analyze the ethics of liver transplants using living donors (...) and to propose guidelines for the procedure before it was introduced in the United States. We used a process of research ethics consultation that involves a collaboration between clinical investigators and clinical ethicists. We concluded that it was ethically appropriate to perform liver transplantation using living donors in a small series of patients on a trial basis, and we published our ethical guidelines in a medical journal before the procedure was introduced. We recommend this prospective, public approach for the introduction of other innovative therapies in medicine and surgery. (shrink)

In order to consider how best to address relationship concerns with potential research participants arising in this study, we will first describe unique features...

People have understandable concerns over what happens to their bodies, both during their life and after they die. Consent to organ donation is often perceived as an altruistic decision made by individuals prior to their death so that others can benefit from use of their organs once they have died. More recently, live organ donation has also been possible, where an individual chooses to donate an organ or body tissue that will not result in their death (such as a kidney). (...) Although these live organ donations can be purely altruistic, they are usually done to benefit a close family member. An additional complicating factor with both kinds of donation is whether forms of extended decision-making can be used as a means of consent. This is where instructions are issued through some form of advance directive giving specific written instructions as to donation or by appointing a proxy surrogate decision-maker to determine such issues. In the case of deceased donation, there is a question as to whether an advance directive can override the wishes of family members. In the case of live organ donation, there is a largely untested concern as to whether advance directives or surrogates can provide acceptable consent to donation when an individual, though still alive, has lost the capacity to consent for themselves. In this paper, I will focus predominantly on the second of these issues concerning live organ donation and the challenges this poses for donors who have lost capacity to consent. I argue that the limitations on advance directives and surrogate decision-making mean that they can only give us an indication of preference and cannot serve as an authoritative consent where there is any dispute over donation. Instead, in turns out that family members have a significant and usually determinate role to play in these decisions. Although I am focusing on organ donation, the implications for this potentially extend to the use of other tissues and even gametes, which could be used for reproductive purposes. (shrink)

IntroductionAt present, in the UK, live lobe donation of the lung is generally considered in the context of patients with cystic fibrosis which is a life-threatening, inherited disease.1 However, if this technique is successfully developed it may be applicable to other patients with end stage lung disease. Cystic fibrosis is a disease where the major morbidity and mortality is due to pulmonary infection and respiratory failure.2 In l938 70% of patients born with CF died within one year of birth, but (...) now the average survival has improved to 32 years.1 The improved survival has been due to improved medical care, but also, and in very large measure, to the devotion of the families who have carried out time-consuming daily treatments such as chest physiotherapy, nebuliser treatment, high calorie diets etc. To these patients and their families lung transplantation brought new hope.3 The first successful transplant for CF was performed in the UK in 1985 and we now have patients alive and well more than ten years after transplantation. However, sadly, nearly 50% of patients with CF die on the transplant waiting list because of a shortage of donor organs from brain stem dead donors. This is a tragedy for the individual patient, the families and those who care for them. Is there a way forward?Can the number of organs available for transplantation be increased?Education of the public so that a relative of a brain dead individual will give permission for the organs to be used has been carried out for many years but only with a small increase in the number of available organs. “Required request” where doctors would be required, by law, to ask relatives of brain dead patients to consider transplantation and “assume consent” where consent to donation is assumed unless there is evidence to the contrary, do not have the …. (shrink)

Autonomy, an individual's right to make personal decisions regarding his/her own health, represents one of the major ethical principles of medicine. While there are many examples citing the benefits this right provides for the individual, the impact that personal healthcare decisions have on others is often neglected. Here, evidence from end-stage renal disease is reviewed to hypothesise the creation of a universal kidney donation programme that although provides unparalleled benefits to its citizens, relies on the participation of a large proportion (...) of the society. Given that this essay also addresses the public's major concerns regarding kidney donation, one of the only remaining implementation barriers is the individuals' right not to participate. Therefore, irrespective of the humane and complex emotionally laden reasons for not enrolling in such programmes, this essay provides some estimates of the significant resource and quality of life costs associated with autonomy. Assuming humans are competent to make informed personal healthcare choices, similar to recent efforts to increase awareness about the negative impact of certain lifestyle choices on global warming, citizens should also be better informed about the medical costs their autonomy has on society. (shrink)

Ethical issues in biomedical research are traditionally examined as distinct from those of clinical care. However, this traditional framing may obscure questions of equity and fairness in both rese...

Doctors routinely refuse donation offers from prospective living kidney donors with certain comorbidities such as diabetes or obesity out of concern for donor wellbeing. This refusal occurs despite the ongoing shortage of kidney transplants and the superior performance of living donor kidney transplants compared to those from deceased donors. In this paper, we argue that this paternalistic refusal by doctors is unjustified and that, within limits, there should be greater acceptance of such donations. We begin by (...) describing possible weak and strong paternalistic justifications of current conservative donor acceptance guidelines and practices. We then justify our position by outlining the frequently under-recognised benefits and the routinely overestimated harms of such donation, before discussing the need to respect the autonomy of willing donors with certain comorbidities. Finally, we respond to a number of possible objections to our proposal for more liberal kidney donor acceptance criteria. We use the situation in Australia as our case study, but our argument is applicable to comparable situations around the world. (shrink)

ate program and identified the ethical commitments and threats living kidney donors perceive throughout the donation process. Method: This quality improvement project reflects a mixed-methods methodology. Qualitative as well as quantitative data were generated through the donor-advocate consultation sessions and the written Living Donor Satisfaction Survey. Thirteen living donors participated. Results: No threats to donor rights were identified by either the donor or the advocate. Nonrelated donors were motivated by altruism, whereas related donors (...) were motivated by a sense of family. A majority of donors reported being changed emotionally and spiritually by the act of serving as a living donor. The living kidney donors were overwhelmingly extremely satisfied with their decision to donate and perceived the living donor advocacy program as being very good. Discussion: Questions have been raised about what role the donor’s spouse should have during the informed consent process. Further research is needed to better understand the role and power of an advocate when threats to the donor’s rights are noted.... (shrink)

The “Dead Donor Rule” (DDR) is an important injunction shaping the field of organ retrieval and scholarly assessments of specific retrieval practices’ permissibility (e.g., Pasquerella, Smith, and...

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the (...) perception that donating does not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

Research on cross-border reproductive care has shown how the geographical, historical, economic and political contexts in which egg donation takes place shape this transnational practice. As many women offer their oocytes due to their precarious conditions, they become seen as ‘bioavailable bodies’. The presence of these bioavailable bodies is key to the emergence of global egg donation hotspots. We argue that feminist research needs to go beyond the conceptualization of egg donors as bioavailable bodies. We suggest the analysis of ‘reproductive (...) biographies’ as an innovative way to understand the entanglements of the global bioeconomy with intimate experiences of reproduction. We suggest advancing current feminist discussions around clinical labour by studying the entanglements between the global bioeconomy, a neoliberalized healthcare system, systematic feminicide and women’s reproductive biographies, and by revealing how women’s decision to donate results from gendered dependencies, obligations of care and coercive moments in egg donors’ reproductive biographies. (shrink)

The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in more depth. Ross and Thistlethwaite detail a framework of five principles—respect for persons, beneficence, justice, vulnerability, and responsibility—that positions prospective living donors as patients. The authors engage readers by applying these principles across a series of examples, issues, and possibilities, the (...) “practice.” Readers may wish to reflect further on the framework's implications, including those related to vulnerability, power, and social justice (to name a few), particularly as these relate to the “theory” of this book. The book is well worth the read for clinicians, ethicists, and others involved in organ donation and transplantation. (shrink)

Norway provides total social welfare coverage for organ transplantations, including free immunosuppressive medication and prepaid life-long follow up for both recipients and donors. Despite these benefits the proportion of living kidney donors has in recent years declined from around 40% of all kidney transplantations to 24%. This study suggests harnessing patient- and donor-narratives as a tool for addressing the current fall in donation rates. The hospital records of 18 recipient/donor dyads were compared with patient and donor (...) accounts elicited in semi-structured interviews. Narratives afford a pertinent supplement to the primarily biomedical and technical information stored in medical records. Even in condensed form, the messages embedded in narratives contribute to a ‘thicker’ understanding of the complexity of living kidney donation -decisions. Narratives represent a source of education for referring-nephrologists wishing to deepen their evaluation skills and avoid making decisions based on insufficient insight into patients’ and potential donors’ values and life-situation. Recipients’ and donors’ unedited accounts of their motivations, worries, doubts and expectations afford a revealing and edifying supplement to the primarily biomedical and technical information stored in medical records. In narratives, the predicaments and dilemmas surrounding LKD become visible and debatable and can serve as support for future donors, recipients and the nephrologists responsible for evaluation–conclusions. Generating narratives raises a number of practical, epistemic and normative challenges. (shrink)