Background: Even in countries with an opt-out or presumed consent system, relatives have a considerable influence on the post-mortem organ harvesting decision. However, their reflection capacity may be compromised by grief, and they are, therefore, often prone to choose refusal as default option. Quite often, it results in late remorse and dissatisfaction. So, a high-quality reflection support seems critical to enable them to gain a stable position and a long-term peace of mind, and also avoid undue loss of potential (...) grafts. In practice, recent studies have shown that the ethical aspects of reflection are rarely and often poorly discussed with relatives and that no or incomplete guidance is offered. No review of the literature is available to date, although it could be of value to improve the quality of the daily practice. Objectives: The objective was to review and synthesize the main concepts and approaches, theories and practices of ethical reflection support of the relatives or surrogates of potential post-mortem organ donors. Research design: A narrative review was performed in the medical, psychological and ethical fields using PubMed, PsycArticles and Web of Science databases (1980–2020). Results: Out of 150 papers, 25 were finally retained. Four themes were drawn: the moral status of the potential post-mortem organ donor, the principlistic approach with its limits and critics, the narrative approach and the transcendental approach. Discussion: This review suggests an extension of psychological support towards ethical reflection support. The process of helping relatives in their ethical exploration of post-mortem organ donation is psychologically and morally characterized. The need for specialized professionals educated and experienced both in clinical psychology and in health ethics to carry out this task is discussed. Practical impact: This review could contribute to optimize the quality of the ethical reflection support by initiating an evolution from an empirical, partial and individual-dependent support to a more systematized, professionalized and exhaustive support. (shrink)

Refusing consent to organ donation remains unacceptably high, and improving consent rates from family or next-of-kin is an important step to procuring more organs for solid organ transplantation in countries where this approval is sought. We have thus far failed to translate fully our limited understanding of why families refuse permission into successful strategies targeting consent in the setting of deceased organ donation, primarily because our interventions fail to target underlying cognitive obstacles. Novel interventions to overcome these hurdles, incorporating an (...) understanding of cognitive psychology and behavioral change therapy, may be beneficial. One potential intervention is to use the concept of nudge theory, where decision-making is influenced by encouraging positive reinforcement and indirect suggestion. Purposefully nudging families to given consent for organ donation by understanding, and then overcoming, their inherent cognitive biases is novel but also controversial. This article explores the roles of relatives in decisions about organ donation, how nudge theory translates to organ donation and discusses the arguments for and against its application. (shrink)

In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who (...) refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. (shrink)

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)

I shall argue, first, that potential kidney donors may be subject to harmful pressure to donate. This pressure may take almost any form; people have diverse interests, and anything that could set them back may qualify as pressure. Given features of the context—the high stakes, the involvement of family, and the social meaning of donation—such pressure may be especially harmful. This problem is less tractable than the more familiar worry that pressure may compromise consent. Screening may ensure donors validly consent, (...) but it provides no protection against harmful pressure. I shall argue, second, that the use of such pressure is the predictable consequence of the prohibition on kidney sales. Potential donors have something—a transplantable kidney—that is both valuable and scarce. Many of them, informed about donation, decide against it. Those in need of a transplant may seek to persuade the unwilling. Given the prohibition, the donation cannot be made more attractive in absolute terms by, say, the addition of money. However, it can be made more attractive in relative terms. If declining the option is made worse, then, by comparison, accepting it is made better. The application of harmful pressure has the desired effect. With so much at stake, and no good alternatives, its use is predictable. I conclude that potential donors' interests should figure more prominently in the discussion of transplant policy. Those who defend the prohibition have made virtually no attempt to account for its impact on that group. (shrink)

Some screening tests for donor blood that are used by blood services to prevent transfusion-transmission of infectious diseases offer relatively few health benefits for the resources spent on them. Can good ethical arguments be provided for employing these tests nonetheless? This paper discusses—and ultimately rejects—three such arguments. According to the ‘rule of rescue’ argument, general standards for cost-effectiveness in healthcare may be ignored when rescuing identifiable individuals. The argument fails in this context, however, because we cannot identify beforehand who (...) will benefit from additional blood screening tests. On the ‘imposed risk’ argument, general cost-effectiveness standards do not apply when healthcare interventions impose risks on patients. This argument ignores the fact that imposing risks on patients is inevitable in healthcare and that these risks can be countered only within reasonable limits. Finally, the ‘manufacturing standard’ argument premises that general cost-effectiveness standards do not apply to procedures preventing the contamination of manufactured medical products. We contend that while this argument seems reasonable insofar as commercially manufactured medical products are concerned, publicly funded blood screening tests should respect the standards for general healthcare. We conclude that these particular arguments are unpersuasive, and we offer directions to advance the debate. (shrink)

I recently attracted the attention of friends and acquaintances by donating a kidney to the NHS, taking advantage of the change in legislation last year, which allows donations to be made anonymously. My motive for doing so can be summed up in the old rule of thumb: “Do as you would be done by”, which may sound philosophically unsophisticated but has always been useful to me and prompts me to give blood and feed the pigeons. I am an atheist and (...) certainly not motivated by any desire to find a reward in heaven. In fact, I did it to make me feel good in both senses of the word—it’s a relief to have done something unambiguously useful at tolerable personal cost in terms of fear and pain.The main burden gradually dawned on me and will be borne for some time to come: in order to maximise that usefulness I should exploit my donation to the full, to tell people how gratifying my experience has been, in order to keep interest in the subject alive and encourage others to consider doing the same. There might also be an increased willingness to offer the organs of dying relatives. Here is an opportunity to press the government to put more money into transplantation and to look more closely than hitherto at the successful Spanish model, which has dramatically reduced the numbers of patients dying on the transplant waiting list in Spain. To this end, some friends and I have set up a charity, More Transplants Please, which aims to have a launching event sometime in 2008 with as much publicity as can be mustered. Beyond producing a manifesto, we are uncertain how to promote anonymous donations. I have had some wild ideas. How about a bunch of donors doing a coast to …. (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)

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)

In organ transplantation, there is a lack of ethical discussion about the recipient’s right not to receive a transplant. Using the current situation of living organ transplantation and deceased organ transplantation in Japan as an example, we prospectively discussed to what extent the recipient’s right not to receive a transplant is ethically acceptable. In directed transplantation from a living donor, a recipient may refuse organ donation from a particular donor. It is preferable that a recipient’s request for organ (...) donation from a donor occurs as part of a transparent process. In nondirected transplantation from a deceased donor, refusal of transplantation from a particular type of donor appears potentially justifiable. There are both moral and pragmatic considerations. Certain refusals based solely on belief are morally unacceptable, and refusal to transplant a recipient based on the donor’s age jeopardizes the entire transplant system. When religious beliefs affect mental and physical health, individualized measures are required for transplant rejection. We also deductively developed a prospective argument based on the current status of donor–recipient communication in living organ transplantation in Japan and the 2010 amendment of the law allowing relatives to be given priority in organ transplantation from deceased donors. (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)

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

BackgroundFamily consent is a prerequisite for the organ donation of the deceased in China. However, a large number of donors are individuals who died due to accidental injuries or unanticipated diseases, which means that most of the families of such donors have just experienced the sudden death of their loved one and have to make a donation decision in a short time. This decision may cause psychological stress and some psychological damage to the minds of relatives of the donors. (...) In addition, cultural sensitivity also has largely caused the relatives of donors inner conflicts and contradictions. And sometimes organ donation may still be stigmatized. However, have they received any emotional support and what is their emotional support needs are some questions that need to be answered. Therefore, this study aims to investigate the emotional support, influencing factors, and needs of the family members of organ donors in Hunan Province, China.Materials and methodsThis is mixed-methods research that combines quantitative and qualitative research methods. A cross-sectional survey was conducted among 102 donor families using a questionnaire to investigate their emotional support status. To further understand their emotional support needs, 12 donor families participated in the semi-structured interview.ResultsThe results confirmed that: A total of 67.7% of the 102 respondents received emotional support or psychological comfort. Thus, only a small number of respondents felt respected by the public. Emotional support came mainly from immediate family members, and official organizations such as the Red Cross. Marital status, health status, occupation, and coping style can affect the emotional support of the donor families. Interview showed that the families of donors need emotional support and psychological aid from psychological professionals mostly. And they also wish to receive the understanding and respect of the public.ConclusionMost families of organ donors received emotional support from family, Red Cross, and friends, but only a minority of families of donors reported receiving respect from the public after the donation. And families of donor showed a strong need for emotional support and professional psychological aid from institutions. (shrink)

In my professional role as anatomy administrator and bequeathal secretary at a large surgical training centre, I am the first point of contact both for people wishing to donate their body, and for newly bereaved relatives telling us that their registered loved-one has died. I am involved in every stage of the process from that first phone call, through to eventual funeral service, cremation of the body and return of the ashes to the family. I am also a registered (...) body donor myself, as I strongly believe in the value of cadaveric training having seen it first hand. When prospective donors and relatives find out that I am also a registered body donor they find this to be very reassuring to know that having ‘behind the scenes’ access has not put me off, and is a good endorsement for the process, …. (shrink)

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

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

Hannah James makes a persuasive case for the use of donated bodies and body parts in surgical training, enabling high fidelity training, improved competency of surgeons and reduced risk of harm to patients from trainees ‘learning on the job’.1 She also identifies some pertinent ethical questions that arise from this practice that should be considered by training organisations, regulatory authorities and the trainees themselves. Many countries throughout the world have regulated programmes, governed by strict ethical principles, for donating bodies, usually (...) to academic institutions for the purposes of medical education.2 In the UK the Human Tissue Authority sets out guiding principles for institutions licensed to handle human tissue including donation of bodies for anatomical examination, education and research; consent, dignity, quality, and honesty and openness.3 The Nuffield Council on Bioethics, in its 2011 report, Human Bodies: donation for medicine and research, identified a number of relevant ethical values including autonomy, altruism, justice, dignity, reciprocity, maximising welfare, and honesty and respect.4 While this report did not focus specifically on donation of human tissue for education and training the principles identified are equally relevant in this context. In terms of maximising welfare whole body donation for education and training provides benefit to many patients over a relatively short time frame …. (shrink)

As of 2009, the number of donors in Japan is the lowest among developed countries. On July 13, 2009, Japan's Organ Transplant Law was revised for the first time in 12 years. The revised and old laws differ greatly on four primary points: the definition of death, age requirements for donors, requirements for brain- death determination and organ extraction, and the appropriateness of priority transplants for relatives.In the four months of deliberations in the National Diet before the new law (...) was established, various arguments regarding brain death and organ transplantation were offered. An amazing variety of opinions continue to be offered, even after more than 40 years have elapsed since the first heart organ transplant in Japan. Some are of the opinion that with the passage of the revised law, Japan will finally become capable of performing transplants according to global standards. Contrarily, there are assertions that organ transplants from brain- dead donors are unacceptable because they result in organs being taken from living human beings.Considering the current conditions, we will organize and introduce the arguments for and against organ transplants from brain- dead donors in contemporary Japan. Subsequently, we will discuss the primary arguments against organ transplants from brain- dead donors from the perspective of contemporary Japanese views on life and death. After introducing the recent view that brain death should not be regarded as equivalent to the death of a human being, we would like to probe the deeply-rooted views on life and death upon which it is based. (shrink)

The issues discussed in this article concern the process of interviewing the bereaved relatives of organ donors, the personal impact, and the potentially painful nature of such research. Narrative interviews were carried out with 24 donor relatives. The relatively small number of donating families and their anonymity mean that little is understood about the experience of having a relative in a critical care situation that ends in donation. The purpose of this study was to develop a theory (...) that explained the organ donation process for relatives of ‘major organ’ donors. A central concern of implementing the investigation was the possible threat it posed to the participants and myself. The sensitive nature of the research made access to relatives difficult. Undoubtedly, my nursing background and personal attributes had an impact on interactions with participants and the pursuance of the research agenda. (shrink)

Background: Organ donation and transplantation have made it possible to both save life and to improve the quality of life for a large number of patients. In the last years there has been an increasing gap between the number of patients who need organs and organs available for transplantation, and the focus worldwide has been on how to meet the organ shortage. This also rises some ethical challenges. Objective: The objective of this study was to explore healthcare professionals' experience of (...) ethics related to care and interaction with critically ill patients with severe brain injuries and their families. Research design: A hermeneutic phenomenological approach was used to explore the participants' experiences. Methods for collecting data were a combination of participant observations and in-depth interviews. Participants and research context: Two ICUs in a Norwegian university hospital were recruited for data collection. A total of 12 cases were observed, and 32 of the healthcare professionals involved were interviewed. Ethical considerations: The study was approved by the Regional Committee for Research Ethics. Permission to the study in the ICUs was obtained from the Chief Physician in the two ICUs respectively. The right of the participants was ensured by written, voluntary, and informed consent. Findings: From the thematic analysis, a structure of the participants' experiences emerged as a process. While the patients' condition was clarified through phases of prognostic ambiguity, gradual clarification and prognostic certainty, interaction with the families was characterized by ambiguity that involved withholding. The prognostic process had a great impact on how the healthcare professionals interacted with the family. The interaction challenged the participants' caring values in various ways and captured an important structure in their experiences of the ethical interaction with the patients' families. These challenges distinguish caring for families in donation situations from caring for relatives of critically ill patients in general. Discussion: In the discussion we have illuminated how professional ethics may be threatened by more pragmatic and utilitarian arguments contained in regulations and transplant act. Conclusion: Ethical questions should be discussed more both in educations of healthcare professionals and in clinical practice. (shrink)

Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the people who could benefit from (...) organs should be provided to families before they make a decision about donation or attempt to over-rule it. (shrink)

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

People positively appraise odors of individuals who are genetically different from themselves. Here we analyzed the relationship between perceived similarity of body odor to the judges’ relatives and their partners, and characteristics attributed to the odor donor. Seventy-six women were asked to smell one of the scents of twenty-nine men, and rate variables related to potential sexual interest in odor donor. We hypothesized that characteristics related to potential sexual interest would be associated with odor donors smelling similar (...) to a partner, rather than with odor donors smelling similar to a relative. We found that perceived similarity to a partner’s scent was positively correlated with ratings of variables related to potential sexual interest in odor donor, whereas the resemblance to a close relative’s scent did not correlate with these assessments. (shrink)

Should we remove whole organs from living donors only in the case where they are genetically related to the intended recipients of such organs? The practice in a majority of European nations is to apply such a restriction. Yet this restriction obviously limits the availability of already scarce donor organs, and curtails the opportunities for altruistic action on the part of those who, in any given case, are not genetically related to the recipient. The author argues that we have (...) a duty to maximise procurement of organs, and that we should respect the 'genetic relative' restriction only in response to compelling moral reasons. The author considers the principal objections to non-related donation and shows them to be misdirected. He concludes that non-related donation should be welcomed where clinically appropriate and truly voluntary. (shrink)

To explore how cultural beliefs are reflected in different popular views of pre-implantation genetic diagnosis for human leukocyte antigen match (popularly known as “savior siblings”), we compare the reception and interpretations, in Germany and Israel, of the novel/film My Sister’s Keeper. Qualitative analysis of reviews, commentaries and posts is used to classify and compare normative assessments of PGD for HLA and how they reproduce, negotiate or oppose the national policy and its underlying cultural and ethical premises. Four major themes emanated (...) from the comparison: loss of self-determination and autonomy; loss of dignity through instrumentalization; eugenics and euthanasia; and saving life. In both countries, most commentaries represented a dominant position, with a few negotiated positions. We also highlight the decoding of a relatively less explored bioethical aspect of My Sister’s Keeper’s narrative, namely the meaning of euthanasia. We conclude by discussing how the findings relate to attempts of providing cultural explanations for the regulation of HLA-PGD. (shrink)

The following short contributions add to the debate on transplantation: one describes the distress of a woman recently widowed when asked for the organs of her dead husband for transplantation, and the other the eagerness with which a boy awaits the death of a potential kidney donor - not a heartless emotion but the longing for a new lease of life.

The World Health Organisation encourages that blood donation becomes voluntary and unremunerated, a system already operated in the UK. Drawing on public documents and videos, this paper argues that blood donation is regarded and presented as altruistic and supererogatory. In advertisements, donation is presented as something undertaken for the benefit of others, a matter attracting considerable gratitude from recipients and the collecting organisation. It is argued that regarding blood donation as an act of supererogation is wrongheaded, and an alternative account (...) of blood donation as moral obligation is presented. Two arguments are offered in support of this position. First, the principle of beneficence, understood in a broad consequentialist framework obliges donation where the benefit to the recipient is large and the cost to the donor relatively small. This argument can be applied, with differing levels of normativity, to various acts of donation. Second, the wrongness of free riding requires individuals to contribute to collective systems from which they benefit. Alone and in combination these arguments present moral reasons for donation, recognised in communication strategies elsewhere. Research is required to evaluate the potential effects on donation of a campaign which presents blood donation as moral obligation, but of wider importance is the recognition that other-regarding considerations in relation to our own as well as others’ health result in a range not only of choices but also of obligations. (shrink)

BackgroundCollecting post-mortem brain tissue is essential, especially from healthy “control” individuals, to advance knowledge on increasingly common neurological and mental disorders. Yet, healthy individuals, on which this study is focused, are still understudied. The aim of the study was to explore, among healthy potential brain donors and/or donors’ relatives, attitude, concerns and opinion about post-mortem brain donation (PMBD).MethodsA convenience sampling of the general population (twins and their non-twin contacts) was adopted. From June 2018 to February 2019, 12 focus groups (...) were conducted in four Italian cities: Milan, Turin, Rome and Naples, stratified according to twin and non-twin status. A qualitative content analysis was performed with both deductive and inductive approaches. Emotional interactions analysis corroborated results.ResultsOne hundred and three individuals (49–91 yrs of age) participated. Female were 60%. Participants had scarse knowledge regarding PMBD. Factors affecting attitude towards donation were: concerns, emotions, and misconceptions about donation and research. Religion, spirituality and secular attitude were implied, as well as trust towards research and medical institutions and a high degree of uncertainty about brain death ascertainment. Family had a very multifaceted central role in decision making. A previous experience with neurodegenerative diseases seems among factors able to favour brain donation.ConclusionsThe study sheds light on healthy individuals’ attitudes about PMBD. Brain had a special significance for participants, and the ascertainment of brain death was a source of debate and doubt. Our findings emphasise the importance of targeted communication and thorough information to promote this kind of donation, within an ethical framework of conduct. Trust in research and health professionals emerged as an essential factor for a collaborative attitude towards donation and informed decision making in PMBD. (shrink)

Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. Unfortunately, they (...) all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty’s philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors’ relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine. (shrink)

Organs available for transplantation are scarce and valuable medical resources and decisions about who is to receive them should not be made more difficult by complicated calculations of desert. Consideration of likely clinical outcome must always take priority when allocating such a precious resource otherwise there is a danger of wasting that resource. However, desert may be a relevant concern in decision-making where the clinical risk is identical between two or more potential recipients of organs. Unlikely as this scenario is, (...) such a decision procedure makes clear the interdependence of organ recipient and organ donor and hints at potential disadvantages for those who are willing to accept but unwilling to donate organs (free-riders). A combined opting-out and preference system weakens many of the objections to opting-out systems and may make the decision to donate organs on behalf of their deceased relatives easier for families. (shrink)

Uterus transplantation is a relatively new intervention. A woman with absolute uterine factor infertility receives, by a surgical procedure, a transplanted uterus, most often by living donation. The uterus recipient may thus become pregnant and conceive her own child. As with any other medical treatment, UTx requires legitimation. The anticipated benefits must outweigh the risks of the medical intervention. The risks and benefits of UTx are by no means unequivocal and cannot be easily determined. The benefits depend on the final (...) evaluation of the suffering to be alleviated by the intervention. In the following, we will analyze the suffering addressed by UTx and discuss its normative value. First, we point out that (a) suffering is generally considered an important normative criterion in medicine as well as in the context of UTx; (b) we then describe the risks and anticipated benefits of UTx for the three persons directly concerned: the child, the donor, and the recipient; (c) we further analyze the suffering addressed by UTx. The intervention addresses a form of existential suffering. We discuss the common notion that existential suffering should be evaluated from the subjective perspective of the sufferer; (d) afterwards, we argue that in a social practice like medicine, a one‐sided evaluation stemming from the sufferer alone is not sufficient; and (e) finally, arguments from a societal perspective lead us to the conclusion that the existential suffering addressed by UTx does not possess a sufficiently strong normative value to legitimize a high‐risk, expensive procedure. (shrink)

The “dead-donor rule” states that, in any case of vital organ donation, the potential donor should be determined to be dead before transplantation occurs. In many countries around the world, neurological criteria can be used to legally determine death (also referred to as brain death). Nevertheless, there is considerable controversy in the bioethics literature over whether brain death is the equivalent of biological death. This international legal review demonstrates that there is considerable variability in how different jurisdictions have (...) evolved to justify the legal status of brain death and its relationship to the dead-donor rule.In this article, we chose to review approaches that are representative of many different jurisdictions—the United States takes an approach similar to that of many European countries; the United Kingdom’s approach is followed by Canada, India, and influences many other Commonwealth countries; Islamic jurisprudence is applicable to several different national laws; the Israeli approach is similar to many Western countries, but incorporates noteworthy modifications; and Japan’s relatively idiosyncratic approach has received some attention in the literature. Illuminating these different justifications may help develop respectful policies regarding organ donation within countries with diverse populations and allow for more informed debate about brain death and the deaddonor rule. (shrink)

Normothermic regional perfusion (NRP) is a relatively new approach to procuring organs for transplantation. After circulatory death is declared, perfusion is restored to either the thoracoabdominal organs (in TA-NRP) or abdominal organs alone (in A-NRP) using extracorporeal membrane oxygenation. Simultaneously, surgeons clamp the cerebral arteries, causing a fatal brain injury. Critics claim that clamping the arteries is the proximate cause of death in violation of the dead donor rule and that the procedure is therefore unethical. We disagree. This account (...) does not consider the myriad other factors that contribute to the death of the donor, including the presence of a fatal medical condition, the decision to withdraw life support, and the physician's actions in withdrawing life support and administering medication that may hasten death. Instead, we claim that physicians play a causative role in many of the events that lead to a patient's death and that these actions are often ethically and legally justified. We advance an “all things considered” view according to which TA-NRP may be considered ethically acceptable insofar as it avoids suffering and respects the wishes of the patient to improve the lives of others through organ donation. We conclude with a series of critical questions related to the practice of NRP and call for the development of national consensus on this issue in the United States. (shrink)

Standardizing consultation processes is increasingly important as clinical ethics consultation becomes more utilized in and vital to medical practice. Solid organ transplant represents a relatively nascent field replete with complex ethical issues that, while explored, have not been systematically classified. In this paper, we offer a proposed taxonomy that divides issues of resource allocation from viable solutions to the issue of organ shortage in transplant and then further distinguishes between policy and bedside level issues. We then identify all transplant related (...) ethics consults performed at the Cleveland Clinic between 2008 and 2013 in order to identify how consultants conceptually framed their consultations by the domains they ascribe to the case. We code the CC domains to those in the Core Competencies for Healthcare Consultation Ethics in order to initiate a broader conversation regarding best practices in these highly complex cases. A discussion of the ethical issues underlying living donor and recipient related consults ensues. Finally, we suggest that the ethical domains prescribed in the Core Competencies provide a strong starting ground for a common intra-disciplinary language in the realm of formal CEC. (shrink)

Organ transplantation from living related donors in Bangladesh first began in October 1982, and became commonplace in 1988. Cornea transplantation from posthumous donors began in 1984 and living related liver and bone marrow donor transplantation began in 2010 and 2014 respectively. The Human Organ Transplantation Act officially came into effect in Bangladesh on 13th April 1999, allowing organ donation from both brain-dead and related living donors for transplantation. Before the legislation, religious leaders issued fatwa, or religious rulings, in favor (...) of organ transplantation. The Act was amended by the Parliament on 8th January, 2018 with the changes coming into effect shortly afterwards on 28th January. However, aside from a few posthumous corneal donations, transplantation of vital organs, such as the kidney, liver, heart, pancreas, and other body parts or organs from deceased donors, has remained absent in Bangladesh. The major question addressed in this article is why the transplantation of vital organs from deceased donors is absent in Bangladesh. In addition to the collection of secondary documents, interviews were conducted with senior transplant physicians, patients and their relatives, and the public, to learn about posthumous organ donation for transplantation. Interviews were also conducted with a medical student and two grief counselors to understand the process of counseling the families and obtaining consent to obtain posthumous cornea donations from brain-dead patients. An interview was conducted with a professional anatomist to understand the processes behind body donation for the purposes of medical study and research. Their narrative reveals that transplant physicians may be reticent to declare brain death as the stipulations of the 1999 act were unclear and vague. This study finds that Bangladeshis have strong family ties and experience anxiety around permitting separating body parts of dead relatives for organ donation for transplantation, or donating the dead body for medical study and research purposes. Posthumous organ donation for transplantation is commonly viewed as a wrong deed from a religious point of view. Religious scholars who have been consulted by the government have approved posthumous organ donation for transplantation on the grounds of necessity to save lives even though violating the human body is generally forbidden in Islam. An assessment of the dynamics of biomedicine, religion and culture leads to the conclusion that barriers to posthumous organ donation for transplantation that are perceived to be religious may actually stem from cultural attitudes. The interplay of faith, belief, religion, social norms, rituals and wider cultural attitudes with biomedicine and posthumous organ donation and transplantation is very complex. Although overcoming the barriers to organ donation for transplantation is challenging, initiation of transplantation of vital organs from deceased donors is necessary within Bangladesh. This will ensure improved healthcare outcomes, prevent poor people from being coerced into selling their organs to rich recipients, and protect the solidarity and progeny of Bangladeshi families. (shrink)

Several authors in bioethics literature have expressed the view that a whole brain conception of death is philosophically indefensible. If they are right, what are the alternatives? Some authors have suggested that we should go back to the old cardiopulmonary criterion of death and abandon the so-called Dead Donor Rule. Others argue for a pluralist solution. For example, Robert Veatch has defended a view that competent persons should be free to decide which criterion of death should be used to (...) determine their death. However, there is very little data on people’s preferences about death determination criteria. We conducted online vignette-based survey with Latvian participants (N = 1416). The data suggest that the pluralist solution fits best with the way our study participants think about death determination—widely differing preferences concerning death determination criteria were observed. Namely, most participants choose one of the three criteria discussed in the literature: whole brain, higher brain, and cardiopulmonary. Interestingly, our data also indicate that study participants tend to prefer less restrictive criteria for determination of their own deaths than for determination of deaths of their closest relatives. Finally, the preferences observed in our sample are largely in accord with the Dead Donor Rule for organ procurement for transplantation. (shrink)

Systems change requires complex interventions. Cross-sector partnerships face the daunting task of addressing complex societal problems by aligning different backgrounds, values, ideas and resources. A major challenge for CSPs is how to link the type of partnership to the intervention needed to drive change. Intervention strategies are thereby increasingly based on Theories of Change. Applying ToCs is often a donor requirement, but it also reflects the ambition of a partnership to enhance its transformative potential. The current use of ToCs (...) in partnering efforts varies greatly. There is a tendency for a linear and relatively simple use of ToCs that does limited justice to the complexity of the problems partnerships aim to address. Since partnership dynamics are already complex and challenging themselves, confusion and disagreement over the appropriate application of ToCs is likely to hamper rather than enhance the transformative potential of partnerships. We develop a complexity alignment framework and a diagnostic tool that enables partnerships to better appreciate the complexity of the context in which they operate, allowing them to adjust their learning strategy. This paper applies recent insights into how to deal with complexity from both the evaluation and theory of change fields to studies investigating the transformative capacity of partnerships. This can serve as a check to define the challenges of partnering projects and can help delineate the societal sources and layers of complexity that cross-sector partnerships deal with such as failure, insufficient responsibility taking and collective action problems at four phases of partnering. (shrink)

Since the Harvard Committees bold and highly successful attempt to redefine death in 1968 (Harvard Ad Hoc committee, 1968), multiple controversies have arisen. Stimulated by several factors, including the inherent conceptual weakness of the Harvard Committees proposal, accumulated clinical experience, and the incessant push to expand the pool of potential organ donors, the lively debate about the definition of death has, for the most part, been confined to a relatively small group of academics who have created a large body of (...) literature of which this issue of the Journal of Medicine and Philosophy is an example. Law and public policy, however, have remained essentially unaffected. This paper will briefly review the multiple controversies about defining death in an attempt to explain why they have and will remain unresolved in the academic community and have even less chance of being understood and resolved by politicians, legislators, and the general public. Considering this, we will end by suggesting the probable course of public policy and clinical practice in the decades ahead. (shrink)

In our society, some aspects of life are off-limits to commerce. We prohibit the selling of children and the buying of wives, juries, and kidneys. Tainted blood is an inevitable consequence of paying blood donors; even sophisticated laboratory tests cannot supplant the gift-giving relationship as a safeguard of the purity of blood. Like blood, health care is too precious, intimate, and corruptible to entrust to the market.The hospice movement in the United States is approximately 40 years old. During these past (...) four decades, the concept of holistic, multidisciplinary care for patients who are suffering from a terminal illness has evolved from a modest, grassroots constellation of primarily volunteer-run and community-governed endeavors to a multimillion dollar industry where the surviving nonprofits compete with for-profit providers, often publicly traded, managed by M.B.A.-trained executives, and governed by corporate boards. The relatively recent emergence of for-profit hospice reflects an increasing commercialization of health care in the United States, the potentially adverse impact of which has been well documented. (shrink)

Although transplantation surgeries are relatively successful and save the lives of many, only few are willing to donate organs. In order to better understand the reasons for donation or refusing donation and their implications on and influence by public policy, we conducted a survey examining public views on this issue in Israel. Between January and June 2010, an anonymous questionnaire based on published literature was distributed among random and selected parts of Israeli society and included organ recipients, organ donors, soldiers, (...) university and high school students, and the general population. The analysis of 799 questionnaires revealed that, although 74.7 percent have not signed a donor card, 60.8 percent of participants consider doing so. Additionally, 54.3 percent of respondents objected to giving or receiving compensation for donation, and, if at all, priority in transplantation care is the most desired form of such compensation. The health status of the donor and knowing that donation saves lives or that there exists a shortage of organs for transplantation are the two factors most affecting motivation to donate. Lack of information, relatives’ views on donation, and type of organ involved in donation are factors most inhibiting donation. Willingness to donate is significantly affected by the proximity of the recipient to the donor. With regard to most organs, their contribution to one’s sense of “self” and its symbolic role strongly affects motivation to donate, except for donation to relatives. Compensation for organ donation has little effect on motivation to donate during life and after death. Our findings suggest new ways to construct a more effective public policy on this issue. (shrink)

The Human Organ Transplantation Act came into officially force in Bangladesh on April 13, 1999, allowing organ donations from both living and brain-dead donors. The Act was amended by the Parliament on January 8, 2018, with the changes coming into effect shortly afterwards on January 28. The Act was revised to extend a living donor pool from close relatives to include certain other relatives such as grandparents, grandchildren, and first cousins. The Act was also revised to allow (...) individuals to prioritize family members in receiving their organs after their death. The aim of this paper is not to carry out an ethical analysis of the Act as a whole but only to focus on aspects relating to priority access for family members to organs. Despite Islam encouraging Muslims to be sympathetic, and to save the life of any member of humankind, saving the life of a relative through organ donation is even more highly valued. The collective and extended structure of the family impacts on the provisions of the Act that only allows Bangladeshis to legally donate their organs to save the lives of relatives and allows individuals to prioritize family members. Recent progress in the practice of organ transplantation raises a number of ethical dilemmas around the allocation of available organs in the context of organ scarcity. A key purpose of introducing incentive into the system of organ allocation is to increase the number of donations from living relatives and initiation of vital organ donations from brain-dead donors. However, allocation criteria based on a living organ donation incentive system would appear to be unethical because there is no provision in the Act with regard to financial compensation for a distant relative donor’s post-operative care in the absence of healthcare coverage. Receiving organs from a distant relative without giving financial compensation for post-operative care places them in a grave health condition and violates the biomedical principle of non-maleficence. An incentive system around brain-dead donors would appear to be ethical as the amended Act allows individuals to prioritize relatives in receiving their organs after death. This provision is intended to initiate the transplantation of vital organs from brain-dead donors as families might bear the cost of keeping the organs alive for transplantation. Regular reassessment of the impact of the Act is necessary to maximize the donation rate of transplantable organs using ethical means. (shrink)

Systems change requires complex interventions. Cross-sector partnerships (CSPs) face the daunting task of addressing complex societal problems by aligning different backgrounds, values, ideas and resources. A major challenge for CSPs is how to link the type of partnership to the intervention needed to drive change. Intervention strategies are thereby increasingly based on Theories of Change (ToCs). Applying ToCs is often a donor requirement, but it also reflects the ambition of a partnership to enhance its transformative potential. The current use (...) of ToCs in partnering efforts varies greatly. There is a tendency for a linear and relatively simple use of ToCs that does limited justice to the complexity of the problems partnerships aim to address. Since partnership dynamics are already complex and challenging themselves, confusion and disagreement over the appropriate application of ToCs is likely to hamper rather than enhance the transformative potential of partnerships. We develop a complexity alignment framework and a diagnostic tool that enables partnerships to better appreciate the complexity of the context in which they operate, allowing them to adjust their learning strategy. This paper applies recent insights into how to deal with complexity from both the evaluation and theory of change fields to studies investigating the transformative capacity of partnerships. This can (1) serve as a check to define the challenges of partnering projects and (2) can help delineate the societal sources and layers of complexity that cross-sector partnerships deal with such as failure, insufficient responsibility taking and collective action problems at four phases of partnering. (shrink)

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the (...) family plays an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos. (shrink)

Systems change requires complex interventions. Cross-sector partnerships face the daunting task of addressing complex societal problems by aligning different backgrounds, values, ideas and resources. A major challenge for CSPs is how to link the type of partnership to the intervention needed to drive change. Intervention strategies are thereby increasingly based on Theories of Change. Applying ToCs is often a donor requirement, but it also reflects the ambition of a partnership to enhance its transformative potential. The current use of ToCs (...) in partnering efforts varies greatly. There is a tendency for a linear and relatively simple use of ToCs that does limited justice to the complexity of the problems partnerships aim to address. Since partnership dynamics are already complex and challenging themselves, confusion and disagreement over the appropriate application of ToCs is likely to hamper rather than enhance the transformative potential of partnerships. We develop a complexity alignment framework and a diagnostic tool that enables partnerships to better appreciate the complexity of the context in which they operate, allowing them to adjust their learning strategy. This paper applies recent insights into how to deal with complexity from both the evaluation and theory of change fields to studies investigating the transformative capacity of partnerships. This can serve as a check to define the challenges of partnering projects and can help delineate the societal sources and layers of complexity that cross-sector partnerships deal with such as failure, insufficient responsibility taking and collective action problems at four phases of partnering. (shrink)

Donors to global health programs and policymakers within national health systems have to make difficult decisions about how to allocate scarce health care resources. Principled ways to make these decisions all make some use of summary measures of health, which provide a common measure of the value (or disvalue) of morbidity and mortality. They thereby allow comparisons between health interventions with different effects on the patterns of death and ill health within a population. The construction of a summary measure of (...) health requires that a number be assigned to the harm of death. But the harm of death is currently a matter of debate: different philosophical theories assign very different values to the harm of death at different ages. This chapter considers how we should assign numbers to the harm of deaths at different ages in the face of uncertainty and disagreement. (shrink)

This issue’s “Legal Briefing” column covers legal developments pertaining to organ donation and allocation. This topic has been the subject of recent articles in JCE. Organ donation and allocation have also recently been the subjects of significant public policy attention. In the past several months, legislatures and regulatory agencies across the United States and across the world have changed, or considered changing, the methods for procuring and distributing human organs for transplantation.Currently, in the U.S., more than 100,000 persons are waiting (...) for organ transplantation. In China, more than 1.5 million people are waiting. Given the chronic shortage of available organs (especially kidneys and livers) relative to demand, the primary focus of most legal developments has been on increasing the rate of donation. These and related developments are usefully divided into the following 12 topical categories: 1. Revised Uniform Anatomical Gift Act2. Presumed Consent and Opt-Out3. Mandated Choice4. Donation after Cardiac Death5. Payment and Compensation6. Donation by Prisoners7. Donor Registries8. Public Education9. Other Procurement Initiatives10. Lawsuits and Liability11. Trafficking and Tourism12. Allocation and Distribution. (shrink)

Organ shortage is a major survival issue for millions of people worldwide. Globally 1.2 million people die each year from kidney failure. In this paper, we critically examine and find lacking extant proposals for increasing organ supply, such as opting in and opt out for deceased donor organs, and parochial altruism and paired kidney exchange for live organs. We defend two ethical solutions to the problem of organ shortage. One is to make deceased donor organs automatically available for (...) transplant without requiring consent from the donor or their relatives. The other is for society to buy nonvital organs in a strictly regulated market and provide them to people in need for free. (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)