This paper explores the ethics of deceased‐directed donation (DDD) and brings a unique perspective to this issue—the relevance of providing family‐centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family‐centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics (...) of DDD is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family‐centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family‐centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family‐centered care, such as those in pediatric hospitals. (shrink)

The difficulty in finding well‐matched kidneys for transplantation into black Americans is compounded by the disproportionately low rate of black donation. A program of directed donation that privileged black‐to‐black transplant could ease the chronic shortage of organs.

The difficulty in finding well‐matched kidneys for transplantation into black Americans is compounded by the disproportionately low rate of black donation. A program of directed donation that privileged black‐to‐black transplant could ease the chronic shortage of organs.

The UCLA Medical Center has initiated a “voucher program” under which a person who donated a kidney would receive a voucher that she could provide to someone of her choosing who could then use it to move to the top of the renal transplantation waiting list. If the use of such vouchers as incentives for donors is morally permissible, then cash payments for kidneys are also morally permissible. But, that argument faces five objections. First, there are some goods whose nature (...) allows them to be exchanged for similar goods but renders them monetarily inalienable. Hence, kidneys might be exchanged for kidneys but not sold for cash. Second, voucher programs respect donor autonomy, whereas the offer of cash payments does not. Third, the burden of proof lies with the advocates of cash payments for kidneys to show that their benefits would outweigh the costs of their legalization. Fourth, allowing cash payments for kidneys would stifle medical innovation. Fifth, allowing cash payments for kidneys would result in these organs being used as collateral to secure loans—and that this would disadvantage potential borrowers who did not want to risk their kidneys in this way. This paper will rebut all these objections. (shrink)

Bioethics has entered a new era: as many commentators have noted, the familiar mantra of autonomy, beneficence, nonmaleficence, and justice has proven to be an overly simplistic framework for understanding problems that arise in modern medicine, particularly at the intersection of public policy and individual preferences. A tradition of liberal pluralism grounds respect for individual preferences and affirmation of competing conceptions of the good. But we struggle to maintain (or at times explicitly reject) this tradition in the face of individual (...) preferences that we find distasteful, suspect, or even repugnant, especially where the broader social good or respect for equality is at stake. Directed donation presents us with such a dilemma: can we uphold the right of self-determination through respect of individual preferences regarding disposition of transplantable organs while at the same time maintaining an allocation system that reflects values of equity and justice claimed to underlie the socially negotiated practice of transplantation? Or are some preferences simply to be deemed unethical and not respected, even if that leads to a reduction in the number of transplantable organs available and to an apparent disregard for the autonomous decisions of the recently deceased? (shrink)

It is common to interpret Rawls's maximin theory of justice as egalitarian. Compared to utilitarian theories, this may be true. However, in special cases practices that distribute resources so as to benefit the worst off actually increase the inequality between the worst off and some who are better off. In these cases the Rawlsian maximin parts company with what is here called true egalitarianism. A policy question requiring a distinction between maximin and "true egalitarian" allocations has arisen in the arena (...) of organ transplantation. This case is examined here as a venue for differentiating maximin and true egalitarian theories. Directed donation is the name given to donations of organs restricted to a particular social group. For example, the family of a member of the Ku Klux Klan donated his organs on the provision that they go only to members of the Caucasian race. While such donations appear to be discriminatory, if certain plausible assumptions are made, they satisfy the maximin criterion. They selectively advantage the recipient of the organs without harming anyone. Moreover, everyone who is lower on the waiting list is advantaged by moving up on the waiting list. This paper examines how maximin and more truly egalitarian theories handle this case arguing that, to the extent that directed donation is unethical, the best account of that conclusion is that an egalitarian principle of justice is to be preferred to the maximin. (shrink)

The issue of directed donation of organs from deceased donors for transplantation has recently risen to the fore, given greater significance by the relatively stagnant rate of deceased donor donation in the UK. Although its status and legitimacy is explicitly recognized across the USA, elsewhere a more cautious, if not entirely negative, stance has been taken. In England, Wales and Northern Ireland, the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, are both (...) silent in this regard. Although so-called conditional donation, donation to (or perhaps withheld from) a specific class, has been outlawed as a product of guidance issued by the Secretary of State for Health issued in the wake of the controversial incident occurring in the North of England in 1998, its intended application to ‘directed’ donation is less certain. Directed and conditional donations challenge the traditional construct of altruistic donation and impartial (equitable) allocation in a very immediate and striking fashion. They implicitly raise important questions as to whether the body or parts of the body are capable of being owned, and by whom. This paper attempts to explore the notion of donor ownership of body parts and its implications for both directed and conditional donation. (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)

abstract Numerous measures have been proposed to change the collection procedure in order to increase the supply of organ donations. One such proposal is to give the candidate donors the right to direct their organs to groups of recipients characterised by specific features like sex, age, disease and geographic location. Four possible justifications for directed donation of organs are considered: the utilitarian benefit, the egalitarian principle of justice, the maximin principle of justice and the autonomy principle. It is (...) concluded that none of these principles justifies the acceptance of designated donations. When potentially life‐saving resources are distributed, only a pure egalitarian distribution is in agreement with the principle of justice.s. (shrink)

In their recent ‘The ethical case for non-directed postmortem sperm donation’, Hodson and Parker outline and defend the concept of voluntary non-directed postmortem sperm donation, the idea that men should be able to register their desire to donate their sperm after death for use by strangers since this would offer a potential means of increasing the quantity and heterogeneity of donor sperm. In this response, we raise some concerns about their proposal, focusing in particular on the (...) fact that current methodologies do not make for a reliable way of ensuring that sperm retrieved postmortem has a good chance of leading to conception, which is in turn likely to make potential recipients reluctant to use such sperm. These concerns add to the ethical doubts that attend aspects of the proposal, making the prospect of implementation of such a policy unlikely at best. (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)

Uterus transplantation (UTx) is highly anticipated for the benefits that it might bring to individuals wanting to carry a pregnancy in order to reproduce who do not have a functioning uterus. The surgery—now having been performed successfully in several countries around the world—remains experimental. However, UTx is at some point expected to become a routine treatment for people without a uterus and considering themselves in need of one: women with absolute uterine factor infertility; transgender women; and even cisgender men who (...) wish to gestate. Given the unique benefits UTx offers, uteri are likely to be ‘in demand’, and such demand, we suggest, will feasibly outstrip supply. Therefore, allocation of those uteri available for transplant may become a pressing issue. In this paper, we consider one aspect of organ allocation—the preferences of donors in making a directed or conditional donation of their uterus. To what extent, in the context of uterus donation, would such donations be ethically permissible? (shrink)

In our paper ‘The ethical case for non-directed postmortem sperm donation’ we argued that it would be ethical for men to donate sperm after death for use by strangers. In their thoughtful response Fredrick and Ben Kroon lay out practical concerns regarding our proposal. They raise issues regarding the quality of sperm collected postmortem based on empirical studies. Second, they claim that concerns about quality would make women unlikely to use sperm collected after death. In this response we (...) explore issues of sperm quality in both living and dead donors. We consider whether there might be ways to ensure quality in both. Finally, we question whether quality should be a barrier to women choosing to use sperm donated after death. (shrink)

Doctors hold coexisting ethical duties to avoid causing deliberate harm to their patients (non-maleficence), to act in patients’ best interests (beneficence), to respect patients’ right to self-determination (autonomy) and to ensure that costs and benefits are fairly distributed among patients (justice). In the context of non-directed altruistic kidney donations (NDAKD), doctors’ duties of autonomy and justice are in tension with those of non-maleficence and beneficence. This article examines these competing duties across three scenarios in which general practitioners (GPs) could (...) promote NDAKD to healthy adults. In the first—when a healthy adult patient prompts the GP to discuss NDAKD—the GP is ethically obligated to counsel the patient about NDAKD to respect their autonomy, yet this does not constitute any form of promotion of NDAKD. In the remaining scenarios, healthy adult patients are unaware of the possibility of NDAKD. In the second, it is ethically permissible for GPs to indirectly raise awareness of NDAKD among healthy adults by displaying recruitment campaign material to non-specified groups of patients in their waiting rooms. In the third, it is ethically impermissible for GPs to directly promote NDAKD to individual healthy adults by raising the possibility of NDAKD with such individuals. The major counterarguments raised against this position are problems with kinds of counselling that fail to reach expected professional standards, rather than problems with the ethical claims made in this article. (shrink)

This chapter explores what we actually mean by data donation after death, and what different types of data donation metadata are involved in the process. It then provides an analysis of the ethical ramifications of each of these different types of data, outlines the concepts of data advance directives and data donation guardians as one way of dealing with these issues, and considers alternative governance mechanisms. The degree of control given to the first data donors may need (...) to be high in order to maintain trust, but over time attitudes may evolve towards everyone giving “big consent” to data donation. (shrink)

As of September 2006, non-directed donation of kidneys and other tissues and organs is permitted in the UK under the new Human Tissue Acts. At the same time as making provision for psychiatric and clinical assessment of so-called “altruistic” donations to complete strangers, the Acts intensify assessments required for familial, genetically related donations, which will now require the same level as genetically unrelated but “emotionally” connected donations by locally based independent assessors reporting to the newly constituted Human Tissue (...) Authority. But there will also need to be considerable reflection on the criteria for “stranger donation”, which may lead us to a new understanding of the moral economy of altruistic organ donation, no matter how mixed the motives of the donor may be. This paper looks at some of the issues that will have to be accommodated in such a framework. (shrink)

In this article we outline and defend the concept of voluntary non-directed postmortem sperm donation. This approach offers a potential means of increasing the quantity and heterogeneity of donor sperm. This is pertinent given the present context of a donor sperm shortage in the UK. Beyond making the case that it is technically feasible for dead men to donate their sperm for use in reproduction, we argue that this is ethically permissible. The inability to access donor sperm and (...) the suffering this causes, we argue, justifies allowing access to sperm donated after death. Moreover, it is known that individuals and couples have desires for certain sperm donor characteristics which may not be fulfilled when numbers of sperm donors are low. Enacting these preferences contributes significantly to the well-being of intended parents, so we argue that this provides apro tantoreason for respecting them. Finally, we explore the benefits and possible disadvantages of such a system for the various parties affected. (shrink)

Proposals for increasing organ donation are often rejected as incompatible with altruistic motivation on the part of donors. This paper questions, on conceptual grounds, whether most organ donors really are altruistic. If we distinguish between altruism and solidarity – a more restricted form of other-concern, limited to members of a particular group – then most organ donors exhibit solidarity, rather than altruism. If organ donation really must be altruistic, then we have reasons to worry about the motives of (...) existing donors. However, I argue that altruism is not necessary, because organ donation supplies important goods, whatever the motivation, and we can reject certain dubious motivations, such as financial profit, without insisting on altruism.Once solidaristic donation is accepted, certain reforms for increasing donation rates seem permissible. This paper considers two proposals. Firstly, it has been suggested that registered donors should receive priority for transplants. While this proposal appears based on a solidaristic norm of reciprocity, it is argued that such a scheme would be undesirable, since non-donors may contribute to society in other ways. The second proposal is that donors should be able to direct their organs towards recipients that they feel solidarity with. This is often held to be inconsistent with altruistic motivation, but most donation is not entirely undirected in the first place (for instance, donor organs usually go to co-nationals). While allowing directed donation would create a number of practical problems, such as preventing discrimination, there appears to be no reason in principle to reject it. (shrink)

Sperm donation is an increasingly common method of assisted reproduction. In the debate on sperm donation, the right to privacy — construed as a right that refers to the limits of the realm of information to which others have access — plays a pivotal role with regard to two questions. The first question is whether the sperm donor’s right to privacy implies his right to retain his anonymity, the second is whether the gamete recipients’ right to privacy entitles (...) them to withhold information about the circumstances of their conception from their donor-conceived offspring. In this contribution, I tackle these two interrelated questions. In part, I defend the view that there is a prima facie right of sperm donors to remain anonymous. Part widens the perspective by taking into consideration the welfare of donor-conceived offspring. I argue that anonymity may harm the child only if the gametes’ recipients decide to disclose information about the circumstances of her birth to the child. Non-disclosure of these circumstances, however, is morally problematic because it may not necessarily harm, but wrong the child. In section, I attempt to rebut some arguments in defense of non-disclosure. In part, I defend the view that the best practice of sperm donation would be ‘direct donation’, i.e. that the identity of the donor is known from the time of conception. Part concludes. (shrink)

Cet essai aborde la question phénoménologique fondamentale de la donation de l’apparaître. L’auteur commence par noter que la distinction husserlienne entre l’apparaître comme vécu (Erscheinen als Erleben) et ce qui apparaît (das Erscheinende) ou phénomène a été critiquée à partir de deux perspectives différentes dont Patočka et Henry sont, respectivement, deux représentants importants. Quoique tous deux critiquent la même distinction husserlienne, l’auteur montre cependant que leurs critiques prennent en réalité des directions opposées. Patočka entend développer une phénoménologie asubjective dans (...) laquelle la donation fondamentale de toute apparence se trouve dans le « se-montrer-soi-même » (Sich-selbst-zeigen) des êtres. Plutôt que dans le domaine de l’auto-donation du vécu de l’expérience (Erleben), cette phénoménologie fonde l’apparence dans la sphère phénoménologique globale du monde. Henry, quant à lui, ne rejette pas le domaine subjectif mais renforce bien plutôt son importance en radicalisant la distinction husserlienne entre l’expérience et le phénomène et en la remplaçant par la différence qu’il établit entre révélation et manifestation. La manifestation suppose toujours la distance et l’intentionnalité. La révélation, en revanche, peut être comprise comme une radicalisation de l’expérience husserlienne, puisqu’elle est un mode d’apparaître qui n’implique pas une forme de pensée (meinen) et d’intentionnalité. Elle est, en tant que telle, exempte de la distance que Henry exclut du domaine d’intériorité où se produit la révélation. L’auteur discute alors ce contraste entre Patočka et Henry et montre à quel point l’accent mis sur le monde dans l’explication de la donation donnée par le premier diffère de la relation à soi subjective qui est au cœur de l’explication de la donation offerte par le second. (shrink)

Contemporary republicans have adopted a less-than-charitable attitude toward private beneficence, especially when it is directed to the poor, worrying that rich patrons may be in a position to exercise arbitrary power over their impoverished clients. These concerns have led them to support impartial public provision by way of state welfare programs, including an unconditional basic income (UBI). In contrast to this administrative model of public welfare, I will propose a competitive model in which the state regulates and subsidizes a (...) decentralized and nonstatist provision of support for the poor. This model will fix the historically objectionable features of private provision by having the state prevent collusion among private charities, deliver information to recipients about alternative sources of assistance, and give substantial grants to charities as well as tax incentives and vouchers to donors. I will contend that such an approach would do a better job of minimizing domination of the poor than traditional welfare states and may prove more politically feasible than a UBI, at least in the near term in certain national contexts. (shrink)

Introduction Cholbi, Michael (et al.) Pages 1-10 -/- Assisted Dying and the Proper Role of Patient Autonomy Bullock, Emma C. Pages 11-25 -/- Preventing Assistance to Die: Assessing Indirect Paternalism Regarding Voluntary Active Euthanasia and Assisted Suicide Schramme, Thomas Pages 27-40 -/- Autonomy, Interests, Justice and Active Medical Euthanasia Savulescu, Julian Pages 41-58 -/- Mental Illness, Lack of Autonomy, and Physician-Assisted Death Varelius, Jukka Pages 59-77 -/- Euthanasia for Mental Suffering Raus, Kasper (et al.) Pages 79-96 -/- Assisted Dying for (...) Individuals with Dementia: Challenges for Translating Ethical Positions into Law Downie, Jocelyn (et al.) Pages 97-123 -/- Clinical Ethics Consultation and Physician Assisted Suicide Adams, David M. Pages 125-147 -/- License to Kill: A New Model for Excusing Medically Assisted Dying? Huxtable, Richard (et al.) Pages 149-168 -/- Medically Enabled Suicides Cholbi, Michael Pages 169-184 -/- Saving Lives with Assisted Suicide and Euthanasia: Organ Donation After Assisted Dying Shaw, David M. Pages 185-192 -/- Implanted Medical Devices and End-of-Life Decisions Gill, Michael B. Pages 193-215 -/- Everyday Attitudes About Euthanasia and the Slippery Slope Argument Feltz, Adam Pages 217-237 -/- “You Got Me Into This…”: Procreative Responsibility and Its Implications for Suicide and Euthanasia Weinberg, Rivka Pages 239-252 . (shrink)

: Iran has had a program of compensated kidney donation from living unrelated (LUR) donors since 1997. The aim of the program was to address the increasing demand for kidney transplantation in a morally sound manner. The program was successful in terms of increasing the number of kidneys available for transplantation. This paper presents a critical review of the program and its ethical status. Denying organ donors legitimate compensation because of the understandable fear of an organ trade is not (...) morally justifiable, and the Iranian model of compensated LUR kidney donation offers substantial benefits that overcome these concerns. Despite its benefits, the program lacks secure measures to prevent the risk of a direct monetary relationship between donors and recipients, and it must be revised in order to be morally justifiable. (shrink)

In line with article 3.4 of EC directive 89/381, Keown has presented an ethical case in support of the policy of voluntary, unpaid donation of blood. Although no doubt is cast on the desirability of the policy, that part of Keown's argument which pertains to the suggested laudability of altruism and of its encouragment by social policy is examined and shown to be dubious.

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, (...) ‘ethical considerations’ and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)

Conditional and directed deceased organ donations occur when donors attempt to influence the allocation of their donated organs. This can include asking that the organs are given to or withheld from certain types of people, or that they are given to specified individuals. Donations of these types have raised ethical concerns, and have been prohibited in many countries, including the UK. In this article we report the findings from a qualitative study involving interviews with potential donors, potential recipients and (...) transplant staff, and use these results as a springboard for further ethical commentary. We argue that although participants favoured unconditional donation, this preference was grounded in a false distinction between ‘medical’ and ‘non-medical’ allocation criteria. Although there are good reasons to maintain organ allocation based primarily upon the existing ‘medical’ criteria, it may be premature to reject all other potential criteria as being unacceptable. Part of participants' justification for allocating organs using ‘medical’ criteria was to make the best use of available organs and avoid wasting their potential benefit, but this can also justify accepting conditional donations in some circumstances. We draw a distinction between two types of waste – absolute and relative – and argue that accepting conditional donations may offer a balance between these forms of waste. (shrink)

In this chapter I consider the narrow and wider benefits of permitting assisted dying in the specific context of organ donation and transplantation. In addition to the commonly used arguments, there are two other neglected reasons for permitting assisted suicide and/or euthanasia: assisted dying enables those who do not wish to remain alive to prolong the lives of those who do, and also allows many more people to fulfill their wish to donate organs after death. In the first part (...) of this chapter I explore the possibility of allowing those who die with assistance to donate their organs and the potential benefits of doing so in countries where some form of assisted dying is legal; in the second part I consider the added force that organ donation considerations bring to the argument in favour of legalizing assisted dying in countries where such practices remain forbidden. (shrink)

Many studies have shown that women are more likely than men to be living kidney donors, and the discrepancy is particularly marked in heterosexual couples: wives are more likely than husbands to donate a kidney to their spouse. This ‘ Gender Kidney Donation Gap’ can be understood in terms of Carol Gilligan’s claims about gender differences in ethical decision-making style, making it appropriate to analyse responses to this imbalance using an ethic of care. This article centres the vast majority (...) of living donors, those who donate in the context of a significant pre-existing relationship. A cost-neutral approach is unfair on donors who make society richer and healthier by helping a loved one. However, models of kidney sale fail to offer an acceptable alternative, either (a) compelling donors to sell into a pool where they do not know the recipient or (b) allowing affluent individuals unfair access to kidneys. Drawing on surrogacy law in England and Wales, a model of compensation is proposed that includes a range of non-financial benefits. This option celebrates donation and expresses gratitude to all donors while avoiding the pitfalls of the marketplace, with an emphasis on fair treatment of donors. Nevertheless, if more generous treatment led to a 10% increase in directed donation, then it would be equivalent to doubling ‘altruistic’ stranger donations. As long as the Gender Kidney Donation Gap persists, the best response is to minimise the discomfort and disruption caused to donors by their profound act of kindness. (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)

Figuring out what pushes individuals to become organ donors has become the holy grail of social scientists interested in transplantations. In this paper I concentrate on solidarity as a determinant of organ donation and examine it through the history of organ donation in Israel. By following the history of transplantation policies since 1968 and examining them in relation to different types of solidarities, this paper leads to a nuanced understanding of the ties between solidarity and health policy. Attempts (...) to foster an all-encompassing consensus on the definition of brain death yielded the Transplantation and the Brain-Respiratory Death Laws of 2008. It was hoped that a wide “civic solidarity” would render Israel self-sufficient in its organ economy. However, the failure of the law led to the breakdown of civic solidarity in organ donation. As a result, initiatives such as the priority policy and non-directed living organ donations, developed out of a narrower conception of solidarity. Juxtaposing these initiatives sheds light on macro level processes for policy makers and suggests solidarity as a key bioethical concept to understand organ donation policies. (shrink)

United Kingdom Transplant reported that, during 2007—2008, a total of 7655 people were awaiting a transplant; however, only 3235 organs were available via the current `opt in' approach. To address this shortfall, new UK legislation sought to increase the number of organs available for donation. The Chief Medical Officer for England and Wales supports the adoption of `presumed consent' legislation, that is, an `opt out' approach, as used in much of Europe. Little research, however, has explored the impact on (...) bereaved relatives, nurses and medical staff of introducing presumed consent legislation. Adopting a phenomenological approach, this study used responses to an initial questionnaire combined with selected interviews with health care professionals to capture their direct experience of presumed consent legislation in three European countries: Portugal, Norway and Belgium. (shrink)

We explore the ethics of using motivational interviewing, an evidence-based, client-centred and directional counselling method, in conversations with next of kin about deceased solid organ donation. After briefly introducing MI and providing some context around organ transplantation and next of kin consent, we describe how MI might be implemented in this setting, with the hypothesis that MI has the potential to bring about a modest yet significant increase in next of kin consent rates. We subsequently consider the objection that (...) using MI in this context would be manipulative. Although we cannot guarantee that MI would never be used in a problematically manipulative fashion, we conclude that its use would, nevertheless, be permissible as a potential means to increase next of kin consent to deceased solid organ donation. We propose that MI be trialled in consent situations with next of kin in nations where there is widespread public support for organ donation. (shrink)

In the preceding commentary, Campbell and Weber raise two valid and important issues concerning non-heart-beating organ donation (NHBOD). First, because the procedure links withdrawal of life support and the potential for subsequent organ donation, the desire for organs may create a situation in which care of the dying individual has relatively less importance and the dying may receive suboptimal care. Second, even if concerns about care of the dying were dealt with adequately, there will not be enough non-heart-beating (...) donors to significantly decrease the organ shortage that exists, making the procedure not worth the risk. We agree that attention to the important details of caring for the dying are, and must be, the primary concern of all health care workers caring for those individuals. Ensuring the patients' comfort, dignity, and autonomy, and providing for family and social support are the mainstays of this care. All policies for NHBOD should clearly support and mandate these concepts. Regarding the second concern, we agree that NHBOD is currently rare; however, evidence is increasing that this type of donation has great potential. Continued growth of the practice in this country will depend largely on public acceptance, which we believe will be directly influenced by whether the public perceives that care of the dying is not compromised by this procedure. (shrink)

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We (...) argue that active interference in peoples’ personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples’ personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin’s model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel’s representation of the particularistic position. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore (...) Québec professionals’ perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

Objectives To increase postmortem organ donation rates, several countries are adopting an opt-out (presumed consent) policy, meaning that individuals are deemed donors unless they expressly refused so. Although opt-out countries tend to have higher donation rates, there is no conclusive evidence that this is caused by the policy itself. The main objective of this study is to better assess the direct impact of consent policy defaults per se on deceased organ recovery rates when considering the role of the (...) family in the decision-making process. This study does not take into account any indirect effects of defaults, such as potential psychological and behavioural effects on individuals and their relatives. -/- Design Based on previous work regarding consent policies, we created a conceptual model of the decision-making process for deceased organ recovery that included any scenario that could be directly influenced by opt-in or opt-out policies. We then applied this model to internationally published data of the consent process to determine how frequently policy defaults could apply. -/- Main outcome measures We measure the direct impact that opt-in and opt-out policies have per se on deceased organ recovery. -/- Results Our analysis shows that opt-in and opt-out have strictly identical outcomes in eight out of nine situations. They only differ when neither the deceased nor the family have expressed a preference and defaults therefore apply. The direct impact of consent policy defaults is typically circumscribed to a range of 0%–5% of all opportunities for organ recovery. Our study also shows that the intervention of the family improves organ retrieval under opt-in but hinders it under opt-out. -/- Conclusions This study may warn policy makers that, by emphasising the need to introduce presumed consent to increase organ recovery rates, they might be overestimating the influence of the default and underestimating the power granted to families. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Future Directions for Oversight of Stem Cell Research in the United States: An UpdateMary A. Majumder (bio) and Cynthia B. Cohen (bio)On 9 March 2009, President Barack Obama (2009a) signed an executive order revoking the statement issued by President George W. Bush during a televised speech in August 2001, in which the latter had sharply restricted the scope of federally funded human embryonic stem cell (hESC) research to cell (...) lines derived (without federal funding) prior to 9:00 P.M. EDT on 9 August 2001. Action by President Obama to remove the cut-off date had been expected. It came as a surprise, however, that he gave authority to determine the scope of eligible research to the Director of the National Institutes of Health (NIH), referencing only general concerns of responsibility, scientific worth, and legality.1 This contrasted not only with the approach of former President Bush, but also with that of former President Clinton, who had expressed personal opposition to the creation of embryos for research and had a distinction between hESCs derived from embryos created for research and those derived from spare embryos enshrined in NIH policy.President Obama’s remarks upon signing the executive order give some insight into the thinking behind his approach. Implicit in them are the views that earlystage human embryos outside the womb do not have full moral status and that the destruction of human embryos in the effort to care for and ease the suffering of human beings who do have full moral status does not devalue human life. The President also stressed that the decision to pursue hESC research reflected not only his opinion, but also a broad social consensus. He concluded with strong ethical commitments on two fronts:We will develop strict guidelines, which we will rigorously enforce, because we cannot ever tolerate misuse or abuse. And we will ensure that our government never opens the door to the use of cloning for human reproduction. It is dangerous, profoundly wrong, and has no place in our society, or any society.(Obama 2009b)The specific guarantee that President Obama gave against government support for the development of cloning techniques for human reproductive purposes made his silence on the use of cloning for research seem significant. Comments he had made in the course of the campaign (Obama 2008) suggested that he would affirm [End Page 195] the Clinton-era policy of limiting federal funding to hESCs derived from spare embryos. Did this silence mean that President Obama was opening the door to federal funding of research cloning when and if scientists might manage that feat?2009 NIH GuidelinesThe answer to this question and several others came on 17 April, when Raynard Kington, the acting director of NIH, released Draft NIH Guidelines for Human Stem Cell Research (NIH 2009), developed by an NIH Stem Cell Task Force, along with a request for public comment within 30 days of their publication in the Federal Register.2 The 2009 Draft Guidelines exclude from federal funding the derivation of hESCs, a restriction mandated by the reenactment of the Dickey-Wicker Amendment as part of the 2009 Omnibus Appropriations Act (Public Law 111-8, Division F, Title V, § 509). The 2009 Draft Guidelines also exclude the use of hESCs derived from embryos created for research purposes, and so represent a refusal to open the funding door as broadly as the NIH interpretation of the Dickey-Wicker Amendment might allow, at least for the time being.It appears that the drafters used as their starting point the 2000 NIH Guidelines for Research Using Human Pluripotent Stem Cells (NIH 2000) dating from the Clinton Administration, rather than more recent guidelines from the National Academy of Sciences (National Research Council 2005; 2007; 2008) and other private bodies. Both the format and content of the 2000 and 2009 NIH efforts are similar, making the departures in the latter stand out in high relief. We highlight departures related to informed consent to embryo donation, creation of human-nonhuman chimeras, and the role of an NIH task force, updating our original comment (Cohen and Majumder 2009).Informed Consent to Embryo DonationThe 2009 NIH Draft Guidelines require that certain statements... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Future Directions for Oversight of Stem Cell Research in the United StatesCynthia B. Cohen (bio) and Mary A. Majumder (bio)Human pluripotent stem cell research, meaning research into cells that can multiply indefinitely and differentiate into almost all the cells of the body, has become a minefield in which science, ethics, and politics have collided over the last decade in the United States. President Barack Obama entered this highly charged (...) territory when he indicated during his campaign that once in office he would issue an executive order expanding federally funded human embryonic stem cell (hESC) research and introduce rigorous oversight of it (Obama 2008a & b). Candidate Obama stated that he would require that the hESC lines involved were derived with donor consent from early embryos that otherwise would be discarded following in vitro fertilization (IVF) treatment. However, in contrast with the policy of President George W. Bush, he would do so without regard to the date of their derivation. He added that he would call upon the director of the National Institutes of Health (NIH) to develop guidelines for federally funded hESC and other pluripotent stem cell research that would draw from the guidelines developed in 2005 by the National Academies of Science (NAS) for privately funded research (National Research Council 2005).A similar policy was written into the 2008 version of the Stem Cell Research Enhancement Act, which reiterates the policy enunciated in earlier versions of this bill, passed twice by the Congress but vetoed by President Bush each time (House of Representatives, 110th Congress 2008).1 Depending on how one reads the 2008 version of the act, it could also apply in certain respects to hESC research that is not federally funded. We proceed on the assumption that the act applies at least to federally funded stem cell research. Therefore, it appears that the president or the Congress, or both, will approve of an expanded policy of federal funding of hESC research, as well as other forms of human pluripotent stem cell research. [End Page 79]This policy would make the guidelines developed by a committee appointed by NAS, a prestigious private body of American scientists and related experts, the primary basis for the development of new federal guidelines for oversight of hESC research in the United States. This would have certain advantages in that those familiar with the relevant scientific issues are likely to address them accurately and stem cell investigators are apt to accept restrictions on their research written by fellow scientists and ethics and policy experts whom they perceive as strong supporters of stem cell research. However, it also would have certain disadvantages. Chief among these is that the NAS committee appointed to write guidelines for this research, in its concern to see stem cell science move forward after a period in which many scientists and others maintained that it had been unduly restricted, might have overlooked or deferred consideration of some pressing ethical and policy issues. We maintain that this is the case—although we also maintain that the NAS guidelines provide a responsible foundation for developing NIH guidelines for stem cell research. Consequently, we propose that an NIH task force charged by the director of NIH with writing new guidelines for hESC and other stem cell research should revise and expand the NAS guidelines in ways that we propose below, as well as others that it considers necessary, and make it obligatory for those seeking federal funding of such research to follow these new guidelines.We highlight certain areas in which an ethical case can be made for strengthening the existing NAS guidelines and certain areas in which more fundamental ethical reflection—and building on that, additional guideline/policy development—seems warranted. Among the sections of the NAS guidelines that need clarification and reworking, we include those regarding consent to embryo donation, which provide one of their central focuses, and the development of human-nonhuman chimeras, which they address relatively briefly. In addition, we maintain that new guidelines need to be written to address the nascent ethical and policy issues raised by the possibility that human gametes will be induced from pluripotent stem cells in the next few years and that... (shrink)

In the beginning of the COVID pandemic, researchers and bioethicists called for human challenge trials to hasten the development of a vaccine for COVID. However, the fact that we lacked a specific, highly effective treatment for COVID led many to argue that a COVID challenge trial would be unethical and we ought to pursue traditional phase III testing instead. These ethical objections to challenge trials may have slowed the progress of a COVID vaccine, so it is important to evaluate their (...) merit. One common way of doing so is to make an analogy to other social practices that are relevantly similar and which we currently sanction. We submit that non-directed live organ donation (NDLOD) is a promising analogy. After arguing that the risks to volunteers for each activity appear similar, we explore potential disanalogies that would undermine the comparison. We note that there are differences in both the kind and certainty of benefit secured by NDLOD compared to challenge trials. We conclude these differences are insufficient to make NDLOD permissible and challenge trials impermissible. Ultimately, if we think the risks associated with NDLOD are ethically permissible, then we should think the same of the risks associated with COVID challenge trials. (shrink)

BackgroundThe success of biobanking is directly linked to the willingness of people to donate their biological materials for research and storage. Ethical issues related to patient consent are an essential component of the current biobanking agenda. The majority of data available are focused on population-based biobanks in USA, Canada and Western Europe. The donation decision process and its ethical applications in clinical populations and populations in countries with other cultural contexts are very limited. This study aimed to evaluate the (...) decision-making experience of the clinical biobank donors, as well as psychological and social motivators and deterrents of this decision and associated ethical risks.MethodsSemi-structured interviews were conducted in two medical institutions, in St Petersburg (Russia), in 2016–2017, among 13 donors of a clinical biobank (pregnant women, cardiac patients, and patients with multiple sclerosis) and three donation organisers—medical specialists involved in recruiting donors for a clinical biobank. Analysis of interview data was based on qualitative content analysis.ResultsDonors of a clinical biobank express beliefs in the absence of risks associated with the donation. The primary motivators for donating to the biobank were: prosocial, indirect reciprocity (response to or anticipation of an act in kind by a third party), intrinsic motivation (to enhance their self-esteem and satisfying their curiosity about the donation process), and comparability with personal values. A high level of trust in biomedical research and the particular physician can contribute to a favourable decision. The overall decision-making process regarding the biobank donation could be described as quick and not based on a careful reading of informed consent documents. The integration of biobank donation decision-making in the process of medical care might prompt patient to donate to biobank without proper consideration. The specific type of therapeutic misconception—the presence of unrealistic hope that donation could provide a direct benefit for a third person in need was discovered.ConclusionsPatients recruited to a clinical biobank in Russia have virtually no concerns as to the storage of their biomaterials. The donation decision is mainly motivated by prosocial attitudes and other factors that are similar to the motivating factors of blood donation. The fact of going through inpatient treatment and poor differentiation between donation for other people's benefit and for research purposes can make the process of obtaining consent more ethically problematic. (shrink)