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)

This paper examines the ethical difficulties of organ donation from living donors and the problem of causing harm to patients or research subjects at their request. Graham Greene explored morally similar questions in his novella, The Tenth Man.

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)

In lieu of an abstract, here is a brief excerpt of the content:Experiences of the Live Organ Donor: Lessons Learned Pave the FutureDianne LaPointe RudowIntroductionThe experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside (...) of the transplant program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue. [End Page 45]Narrative ThemesBased on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.Live Donation has Psychological Effects on the DonorThere are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.Pre–donation psychological issuesTraditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of... (shrink)

The American Journal of Bioethics, Volume 11, Issue 10, Page 15-16, October 2011.

The Australian Federal Government has announced a two-year trial scheme to compensate living organ donors. The compensation will be the equivalent of six weeks paid leave at the rate of the national minimum wage. In this article I analyse the ethics of compensating living organ donors taking the Australian scheme as a reference point. Considering the long waiting lists for organ transplantations and the related costs on the healthcare system of treating patients waiting (...) for an organ, the 1.3 million AUD the Australian Government has committed might represent a very worthwhile investment. I argue that a scheme like the Australian one is sufficiently well designed to avoid all the ethical problems traditionally associated with attaching a monetary value to the human body or to parts of it, namely commodification, inducement, exploitation, and equality issues. Therefore, I suggest that the Australian scheme, if cost-effective, should represent a model for other countries to follow. Nonetheless, although I endorse this scheme, I will also argue that this kind of scheme raises issues of justice in regard to the distribution of organs. Thus, I propose that other policies would be needed to supplement the scheme in order to guarantee not only a higher number of organs available, but also a fair distribution. (shrink)

Free and informed consent is generally acknowledged as the legal andethical basis for living organ donation, but assessments of livingdonors are not always an easy matter. Sometimes it is necessary toinvolve psychosomatics or ethics consultation to evaluate a prospectivedonor to make certain that the requirements for a voluntary andautonomous decision are met. The paper focuses on the conceptualquestions underlying this evaluation process. In order to illustrate howdifferent views of autonomy influence the decision if a donor's offer isethically acceptable, (...) three cases are presented – from Germany, theUnited States, and India. Each case features a person with questionabledecision-making capacity who offered to donate a kidney for a siblingwith severe renal insufficiency. Although the normative framework issimilar in the three countries, different or sometimes even contraryarguments for and against accepting the offer were brought forward. Thesubsequent analysis offers two explanations for the differences inargumentation and outcome in spite of the shared reference to autonomyas the guiding principle: (1) Decisions on the acceptability of a livingdonor cannot simply be deducted from the principle of autonomy but needto integrate contextual information; (2) understandings of the wayautonomy should be contextualized have an important influence on theevaluation of individual cases. Conclusion: Analyzing the conceptualassumptions about autonomy and its relationship to contextual factorscan help in working towards more transparent and better justifieddecisions in the assessment of living organ donors. (shrink)

ABSTRACT This paper considers what should be done about offers of organs for transplant that come with racist strings attached. Saving lives or improving their quality seem powerful reasons to accept the offer. Fairness, justice, and rejecting racism seem like powerful reasons against. This paper argues that conditional allocation should occur when it would provide access to organs for at least one person without costing others their access to organs. The bulk of the paper concentrates on defending this claim against (...) these objections: (i) that the good that might come about through conditional allocation does so through wrongful complicity in the racist's wrongdoing; (ii) that conditional allocation symbolizes support for racism; and (iii) that conditional allocation is unjust or unfair and is, for that reason, impermissible. The final section, on conditional allocation as a policy, considers the speculative possibility that conditional allocation would reduce access to organs for some, but it argues that, even then, conditional allocation could be justified. (shrink)

On May 24, 1995, the American Medical Association Council on Ethical and Judicial Affairs issued a rather controversial opinion that it is ethically permissible to use anencephalic infants as living organ donors. Approximately 1,000 to 2,000 infants are born each year in the United States with anencephaly, a congenital birth defect whereby the infant has no forebrain and cerebrum. Without higher brain functions, the infants can never experience consciousness, thoughts, emotions, or pain. Fewer than half survive more (...) than a day, and more than 90 percent die within one week. However, by the time brain death occurs in anencephalic infants, their organs are no longer suitable for donor purposes because they have deteriorated beyond use.In 1988, the AMA Council declared that it is ethical to use the infants as organ donors only after they have died. Now the Council has revised that opinion, and it proposes to allow removal of organs before death, as long as the parents consent and two doctors concur in the diagnosis of anencephaly. (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)

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)

There is a growing consensus that the offer of a reasonable compensation for oocyte donation for reproductive treatment is acceptable if it does not compromise voluntary and altruistically motivated donation. However, how to translate this ‘reasonable compensation’ in practice remains unclear as compensation rates offered to oocyte donors between different European Union countries vary significantly. Clinics involved in oocyte donation, as well as those in other medical contexts, might be encouraged in calculating a more consistent and transparent compensation for (...) donors if the elements that constitute a reasonable compensation are explicated. In doing so, lessons can be learnt from living organ donation and medical research participation. Practices in which the elements of a reasonable compensation for the individuals involved have already been more defined in the literature. By means of analogical reasoning, we will outline the different components of a reasonable compensation and subsequently apply these to the context of oocyte donation. We will argue that oocyte donors should first of all be reasonably reimbursed direct expenses related to the donation, without standard remuneration of lost wages. Second, donating oocytes requests a serious time investment, therefore donors are entitled to suitable compensation for their time spent and efforts made. Finally, we will explain that a reasonable compensation consisting of these two components allows for altruism to remain the key value of oocyte donation for reproductive treatment. However, if we acknowledge that donors’ motives are more complex and often include reasons from self-interest, the reasonable compensation may be complemented with modest (non)monetary benefits. (shrink)

In this paper, I claim that live uterus donors ought to be considered for the possibility of compensation. I support my claim on the basis of comparable arguments which have already been applied to gamete donation, surrogacy, and other kinds of organ donation. However, I acknowledge that there are specificities associated with uterus donation, which make the issue of incentive and reward a harder ethical case relative to gamete donation, surrogacy, and other kinds of organ donation. Ultimately, (...) I contend that while reimbursement for the costs incurred by live uterus donors should be treated as a necessary ethical minimum, how much further we ought to remunerate uterus donations remains an open question. (shrink)

Many are unwilling to donate their vital organs in death. To affirm this choice is to prefer the integrity of one's corpse over possibly saving and improving the lives of others. This position enjoys no sound defence. Refusing to donate amounts to a gratuitous moral failure.Export citation.

In a recent article in this journal, we argued that living organ donation from a parent to a child should be described as a beneficent rather than an altruistic act. Emotional relationships can generate an obligation of beneficence to help those with whom we have these relationships. This may involve an obligation for a parent to donate an organ to a child, even though it entails some risk to the parent. The parent's donation is not altruistic because (...) altruistic acts are not obligatory but optional, and they are motivated solely or primarily by other-regarding concerns. In contrast, donor parents' other-regarding concerns are inseparable from their own self-regarding concerns. An individual who donates to a stranger is acting altruistically. She may choose to help others to whom she is not emotionally related for a variety of reasons—sympathy, compassion, generosity, or a desire to give something back to humanity. But she does not have an obligation to do so. Although she may benefit as a consequence of donating, this is not her reason for donating. Instead, her action is motivated by a concern for the recipient's own sake. This is what makes the donation altruistic, and it can be justified without any expectation of benefit to the donor. However, although the potential competent donor decides whether the donation is in her best interests, physicians have the right to refuse to perform a transplant if the risks to the donor are too great or the potential benefits to the recipient are too small. (shrink)

About 6,000 individuals participate in the U.S. transplant system as a living organ donor each year. Organ donation by living individuals is a unique procedure, where healthy patients undergo a major surgical operation without any direct functional benefit to themselves. In this article, the authors explore how the ideal of informed consent guides education and evaluation for living organ donation. The authors posit that informed consent for living organ donation is a process. (...) Though the steps in this process are partially standardized through national health policy, they can be improved through institutional structures at the local, transplant center-level. Effective structures and practices aimed at supporting and promoting comprehensive informed consent provide more opportunities for candidates to ask questions about the risks and benefits of living donation and to opt out voluntarily Additionally, these practices could enable new ways of measuring knowledge and improving the consent process. (shrink)

According to Glannon and Ross, for an act to be considered altruistic, it cannot be obligatory nor motivated by expectation of self-reward. Given that parents are obligated to help their children and stand to benefit greatly from donating, the authors conclude that parent to child organ donation is not altruistic. Are they correct? I am not sure. In my view, this is a semantic question and the answer depends upon how one defines altruism. Altruism is a complex subject that (...) means different things to different people. If we say that an altruistic act is one that is performed voluntarily, is risky or costly to the actor, and is designed only to benefit others with no expectation of self-reward, then it may be difficult or impossible to identify any such acts. When one risks her own life to save a stranger, others may ask: “Did she really act solely to benefit another or was she motivated, at least in part, by a need to satisfy her conscience or a desire to feel good about herself?” This question is relevant to the motivation of living organ donors. In contrast to the authors' answer that strangers who donate organs do so only out of concern for other people, Carl Fellner argued that many living organ donors, even those who are not related to their recipients, act to benefit themselves. If Fellner is correct, and if organ donation by parents is not altruistic because of the possibility of self-reward, perhaps the same is true of organ donation by strangers. (shrink)

The “standard position” on organ donation is that the donor must be dead in order for vital organs to be removed, a position with which we agree. Recently, Robert Truog and Walter Robinson have argued that brain death is not death, and even though “brain dead” patients are not dead, it is morally acceptable to remove vital organs from those patients. We accept and defend their claim that brain death is not death, and we argue against both the US (...) “whole brain” criterion and the UK “brain stem” criterion. Then we answer their arguments in favour of removing vital organs from “brain dead” and other classes of comatose patients. We dispute their claim that the removal of vital organs is morally equivalent to “letting nature take its course”, arguing that, unlike “allowing to die”, it is the removal of vital organs that kills the patient, not his or her disease or injury. Then, we argue that removing vital organs from living patients is immoral and contrary to the nature of medical practice. Finally, we offer practical suggestions for changing public policy on organ transplantation. (shrink)

After a long search, Jonathan has finally found someone willing to donate a kidney to him and thereby free him from dialysis. Meredith is Jonathan's second cousin, and she considers herself a generous person, so although she barely knows Jonathan, she is willing to help. However, as Meredith learns more about the donation process, she begins to ask questions about Jonathan: “Is he HIV positive? I heard he got it using drugs. Has he been in jail? He's already had one (...) live donor, so what happened to the first kidney? Did he forget to take his drugs or something?” The transplant center must, then, decide if Meredith is, in fact, entitled to answers to these kinds of questions. According to the Consensus Statement on the Live Organ Donor, “It is incumbent on the transplant center to provide full and accurate disclosure to potential donors of all pertinent information regarding risk and benefit to the donor and recipient.” But whether answers to the Meredith's questions count as “pertinent information regarding the risk and benefit” is the issue at hand. (shrink)

Emotionally-related live organ donation is different from almost all other medical treatments in that a family member or, in some countries, a friend contributes with an organ or parts of an organ to the recipient. Furthermore, there is a long-acknowledged but not well-understood gender-imbalance in emotionally-related live kidney donation. This article argues for the benefit of the concept of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) (...) and the recipient are engaged in a love relation. The concept of just love is helpful in the analysis of these live organ donations even if no statistical gender-imbalance prevails. It is particularly helpful, however, in the analysis of the gender-imbalance in live kidney donations if these donations are seen as a specific kind of care-work, if care-work is experienced as a labour one should perform out of love and if women still experience stronger pressures to engage in care-work than do men. The aim of the article is to present arguments for the need of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) and the recipient are engaged in a love relation. The aim is also to elaborate two criteria that need to be met in order for love to qualify as just and to highlight certain clinical implications. (shrink)

Living organ donation has developed into an important therapeutic option in transplantation medicine. However, there are some medico-ethical problems that come along with the increasing reliance on this organ source. One of these concerns is based on the observation that many more women than men function as living organ donors. Whereas discrimination and differential access have been extensively discussed in the context of cadaveric transplantation and other areas of health care, the issue of gender (...) imbalance in living organ donation has received less attention. This paper presents relevant data from the Eurotransplant and UNOS transplantation systems and discusses possible explanations for the documented gender discrepancies. The conclusion calls for are view of existing practice guidelines in order to secure effective protection of particularly vulnerable potential donors and an equitable donor-recipient-ratio in living organ donation. (shrink)

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation (...) through the lens of 32 key stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one’s organs as equivalent to saving one’s own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients. (shrink)

Public surveys conducted in many countries report widespread willingness of individuals to donate a kidney while alive to a family member or close friend, yet thousands suffer and many die each year while waiting for a kidney transplant. Advocates of financial incentive programs or “regulated markets” in kidneys present the problem of the kidney shortage as one of insufficient public motivation to donate, arguing that incentives will increase the number of donors. Others believe the solutions lie—at least in part—in (...) facilitating so-called “altruistic donation;” harnessing the willingness of relatives and friends to donate by addressing the many barriers which serve as disincentives to living donation. Strategies designed to minimize financial barriers to donation and the use of paired kidney exchange programs are increasingly enabling donation, and now, an innovative program designed to address what has been termed “chronologically incompatible donation” is being piloted at the University of California, Los Angeles, and elsewhere in the United States. In this program, a person whose kidney is not currently required for transplantation in a specific recipient may instead donate to the paired exchange program; in return, a commitment is made to the specified recipient that priority access for a living-donor transplant in a paired exchange program will be offered when or if the need arises in the future. We address here potential ethical concerns related to this form of organ “banking” from living donors, and argue that it offers significant benefits without undermining the well-established ethical principles and values currently underpinning living donation programs. (shrink)

The recent review of the Unrelated Live Transplant Regulatory Authority provides administrative and statistical information regarding living donor kidney transplantation in the United Kingdom.1 However, it leaves much unsaid. For example, although the report does mention the number of live kidney donations from unrelated donors that ULTRA has approved, it fails to mention that the United Kingdom has a low live kidney donation rate compared with other European countries .2 More importantly, the report does not address the fundamental (...) question of whether the legal framework underlying ULTRA is morally justified. The legal regime in the United Kingdom proceeds on the tacit assumption that genetically unrelated donors are much more vulnerable to coercion than are related donors, and hence are more in need of protective regulation. In this article, we argue that the distinction drawn in the United Kingdom between genetically related and unrelated donors is difficult to justify, that it unnecessarily discourages live organ donation, and that the law should be changed.BACKGROUNDThe Unrelated Live Transplant Regulatory Authority is a creature of the Human Organ Transplant Act , which was enacted by parliament in 1989, and which came into force, with regulations, on 1 April 1990.3–5 The Human Organ Transplant Act was enacted hastily after the General Medical Council’s inquiry into the notorious case of a British physician’s involvement in transplants involving Turkish peasants.6 Young men were inveigled by an agent to travel to London, ostensibly to take up new jobs. In fact, they were being recruited as living donors of kidneys transplanted into fee paying foreign patients. The consequent debate in the media attracted an emotional …. (shrink)

With the case of Belgium as a negative example, this paper will evaluate the legitimacy of using mentally incompetents as organ sources. The first section examines the underlying moral dilemma that results from the necessity of balancing the principle of respect for persons with the obligation to help people in desperate need. We argue for the rejection of a radical utilitarian approach but also question the appropriateness of a categorical prohibition. Section two aims to strike a fair balance between (...) the competing interests at stake and to define the conditions under which organ harvest from mentally incompetents might be morally acceptable. To this end, we morally assess the main requirements that have been put forward to allow organ removal from incompetent donors. We conclude that the current Belgian legislation is far too permissive and that national regulations that do not permit the harvest of non-regenerable organs from mentally incompetents in exceptional circumstances are too restrictive. On the basis of this discussion, we propose a number of guiding principles for decision-making in this area. (shrink)

Arguments against directed altruistic living organ donation are too weak to justify a ban. Potential donors who want to specify the non-related person or group of persons to receive their donated kidney should be accepted. The arguments against, based on considerations of motivation, fairness and (non-)anonymity (e.g. those recently cited by an advisory report of the Dutch Health Council), are presented and discussed, as well as the Dutch Governments response. Whereas the Government argues that individuals have authority (...) with regard to the allocation of their organs, partial considerations have not been sufficiently explored. In addition, it is argued that partial relationships govern human life, are significant and should be valued highly. These relationships are at the core of accepted living kidney donation between relatives (family members, partners, friends). Respecting the particular act of living donation goes beyond respect for autonomy; it touches upon our personal and social identity. Donation, e.g. of a kidney, is not undertaken strictly for the benefit of the recipient, but also to meet the moral standards we wish to set for ourselves. This consideration, rooted in a view of moral identity, provides the basis for many forms of directed donation that are both partial and justified. If the importance of this is not recognized, social policies can be neither adequate nor effective. (shrink)

Living organ donation will soon become the source of the majority of organs donations for transplant. Should mentally handicapped people be allowed to donate, or should they be considered a vulnerable group in need of protection? I discuss three cases of possible living organ donors who are developmentally disabled, from three different cultures, the United States, Germany, and India. I offer a brief discussion of three issues raised by the cases: (1) cultural diversity and cultural (...) relativism; (2) autonomy, rationality, and self-interest; and (3) the proper use and role for clinical ethics consults. (shrink)

While different positions on the permissibility of organ markets enjoy support, there is widespread agreement that some benefits to living organ donors are acceptable and do not raise the same moral concerns associated with organ markets, such as exploitation and commodification. We argue on the basis of two distinctions that some benefit packages offered to donors can defensibly surpass conventional reimbursement while stopping short of controversial cash payouts. The first distinction is between benefits that (...) defray the costs of donating an organ and benefits that incentivize donation by offer- ing something in excess of defraying. The second distinction is between benefits that compensate donors and benefits that are non-compensating. We argue that non-compensating benefits are innocent of moral concerns typically associated with controversial cash payouts, and thus may be a morally promising avenue for increasing rates of kidney donation to address the tragic results of undersupply. (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)

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not (...) adequate morally to justify the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection. (shrink)

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not (...) adequate morally to justify the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection. (shrink)

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)

In this letter to the editor, the author responds to articles by G. Testa and colleagues, "Living Donation and Cosmetic Surgery: A Double Standard in Medical Ethics?" and by L. Friedman Ross and colleagues, "Different Standards Are Not Double Standards: All Elective Surgery Patients Are Not Alike," which were published in the Summer 2012 issue of The Journal of Clinical Ethics.

Gratitude is both expected and problematic in live organ donation. Are there grounds to require it, and to forbid access to live donor transplantation to a recipient who fails to signal that he feels any form of gratitude? Recipient gratitude is not currently required for organ donation, but it is expected and may be a moral requirement. Despite this, we argue that making it a condition for live organ transplantation would be unjustified. It would constitute a problematic (...) and disproportionate punishment for perceived immoral behaviour on the part of the recipient. It would also bar the donor from positive aspects of organ donation that remain even in the absence of recipient gratitude. A potential recipient's lack of gratitude should be explored as a possible symptom of other morally problematic issues and integrated into the information provided to the potential donor. Recognition of the donor's gift and gratitude for it may also need to be expressed in part by others. This last aspect is relevant even in cases where the recipient feels and expresses gratitude. (shrink)

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so-called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: institutionally organized campaigns based on historical cases (...) aimed at promoting non-directed altruistic donation; personal case-based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; institutionally organized personal case-based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two. (shrink)

Lethal organ donation is a hypothetical procedure in which vital organs are removed from living donors, resulting in their death. An important objection to lethal organ donation is that it would infringe the prohibition on doctors intentionally causing the death of patients. I present a series of arguments intended to undermine this objection. In a case of lethal organ donation, the donor’s death is merely foreseen, and not intended.

Seventeen-year-old David is a perfect organ match for his younger brother, Ken, who has kidney failure. David understands that the procedure presents some risk for him and that after surgery he may no longer be able to continue playing football. His idols all have been football players and he now plays on his high school's team. Nevertheless, he wants to donate a kidney to his brother and agrees to being a donor as soon as the option is mentioned. He (...) never displays any ambivalence and says, I want to donate my kidney because then I'll be a hero to my family. This close family - of two parents and five older siblings — strongly supports the seventeen-year-old's decision, especially after an older brother, who was also a perfect organ match, is found medically (anatomically) unsuitable.The parents and two of the older siblings could still be medically acceptable donors: their organs are likely to be better grafts (one haplotype matches) than a non-related cadaveric kidney would be, but less compatible than the perfect organ match (haploidentical) that could be provided by David, the adolescent brother. Studies have shown that in the short run there is little difference in the survivability of organs from different classes of donors. After several years, however, there is a significant difference with perfectly matched kidneys being much less prone to rejection than the less ideally matched organs (1, p. 118). (shrink)

Given the dramatic shortage of transplantable organs, demand cannot be met by established and envisioned organ procurement policies targeting postmortem donation. Live organ donation is a medically attractive option, and ethically permissible if informed consent is given and donor beneficence balances recipient non-maleficence. Only a few legal and regulatory frameworks incentivise LOD, with the key exception of Israel’s Organ Transplant Law, which has produced significant improvements in organ donation rates. Therefore, I propose an organ procurement (...) system that incentivises LOD by allocating additional priority points to the living donor on any transplant waiting list. I outline benefits and challenges for potential recipients, donors and society at large, and suggest measures to ensure medical protection of marginalised patient groups. (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 dead donor rule (DDR) has facilitated the saving of hundreds of thousands of lives. Recent advances in heart donation, however, have exposed how DDR has limited donation of all organs. We propose advancing the moment in the dying process at which death can be determined to increase substantially the supply of organs for transplantation. We justify this approach by identifying certain flaws in the Uniform Determination of Death Act and proposing a modification of that law that permits earlier procurement (...) of healthier organs in greater numbers. (shrink)

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)

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...

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)

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)

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)

Cadaver organs should be automatically availableThe shortage of donor organs and tissue for transplantation constitutes an acute emergency which demands radical rethinking of our policies and radical measures. While estimates vary and are difficult to arrive at there is no doubt that the donor organ shortage costs literally hundreds of thousands of lives every year. “In the world as a whole there are an estimated 700 000 patients on dialysis . . .. In India alone 100 000 new patients (...) present with kidney failure each year” . Almost “three million Americans suffer from congestive heart failure . . . deaths related to this condition are estimated at 250 000 each year . . . 27 000 patients die annually from liver disease . . .. In Western Europe as a whole 40 000 patients await a kidney but only . . . 10 000 kidneys”1 become available. Nobody knows how many people fail to make it onto the waiting lists and fail to register in the statistics. “As of 24th November 2002 in the United Kingdom 667 people have donated organs, 2055 people have received transplants, and 5615 people are still awaiting transplants.”2Conscious of the terrible and unnecessary tragedy that figures like these represent I have been advocating for more than 20 years now some radical measures to stem this appalling waste of human life. The measure which is the subject of Hamer and Rivlin’s paper 3 concerns the automatic availability of all cadaver organs—a measure, which I first advocated publicly in 1983.4THE AUTOMATIC AVAILABILITY OF DONOR ORGANSWe need to begin by being clear about just what it is I propose and why. At the moment in the United Kingdom we …. (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)