It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy and beneficence. To overrule one (...) principle in favour of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified. (shrink)

This article explores the processes through which Australian recipients select unknown donors for use in assisted reproductive technologies and speculates on how those processes may affect the future life of the donor-conceived person. I will suggest that trust is an integral part of the exchange between donors, recipients, and gamete agencies in donor conception and heavily informs concepts of relatedness, race, ethnicity, kinship, class, and visibility. The decision to be transparent about a child’s genetic parentage affects recipient (...) parents’ choices of donor, about who is allowed to “know” children’s genetic backgrounds, and how important it is to be able to “pass” as an unassisted conception. In this way, recipients must trust the process, institutions, and individuals involved in their treatment, as well as place trust in the future they imagine for their child. The current market for donor gametes reproduces normative conceptions of the nuclear family, kinship, and relatedness by facilitating “matching” donors to recipients by phenotype and cultural affinities. Recipient parents who choose not to prioritize “matching,” and actively disclose the process of children’s conceptions, may embark on a project of queering heteronormative family structures and place great trust in both their own children and changing social attitudes to reduce stigma and generate acceptance for non-traditional families. (shrink)

The moral acceptability of anonymous gamete donation remains contested. Although the view that the value of parent–child relationships should not depend on genetic ties is “nearly axiomatic” among philosophers and bioethicists, one well-known dissenter remains: David Velleman. I argue that most rebuttals to Velleman have simply talked past him because they have failed to understand his fundamental point—that donor conception is a violation of human dignity and as such is wrong even if it does not harm individuals. I (...) challenge Velleman on his own terms by endorsing his metaphysical picture before showing that donor conception is not necessarily a violation of human dignity. I show this by arguing that gamete donation is held to a double standard of self-knowledge. I develop an account of the self that recognizes that certain kinds of challenges to one's flourishing can contribute to an individual's strength and self-knowledge. I defend my view against objections that genetic knowledge is categorically different from other ways of knowing oneself and I show that donor conception can respect human dignity as long as it meets certain conditions. (shrink)

The moral acceptability of anonymous gamete donation remains contested. Although the view that the value of parent–child relationships should not depend on genetic ties is “nearly axiomatic” among philosophers and bioethicists, one well‐known dissenter remains: David Velleman. I argue that most rebuttals to Velleman have simply talked past him because they have failed to understand his fundamental point—that donor conception is a violation of human dignity and as such is wrong even if it does not harm individuals. I (...) challenge Velleman on his own terms by endorsing his metaphysical picture before showing that donor conception is not necessarily a violation of human dignity. I show this by arguing that gamete donation is held to a double standard of self‐knowledge. I develop an account of the self that recognizes that certain kinds of challenges to one's flourishing can contribute to an individual's strength and self‐knowledge. I defend my view against objections that genetic knowledge is categorically different from other ways of knowing oneself and I show that donor conception can respect human dignity as long as it meets certain conditions. (shrink)

ABSTRACTAs of 2008, surrogacy is legal and openly practised in various places; Japan, however, has no regulations or laws regarding surrogacy. This paper reports the situation of surrogacy in Japan and in five other regions to clarify the pros and cons of prohibiting surrogacy, along with the problems and issues relating to surrogacy compensation.Not only in a country such as France that completely prohibits surrogacy within the country, but also in a country such as the UK that allows non‐commercial surrogacy, (...) infertile couples travel overseas for the purpose of surrogacy. In addition, some couples might seek underground surrogacy if the government prohibits surrogacy. If an intended parent couple and a surrogate make an agreement among themselves and then a problem occurs, they cannot ask for support from professionals or bring a case to court, as can be observed in South Korea and Taiwan.We also conclude that there is little difference between commercial surrogacy and non‐commercial surrogacy in the absence of a clear definition of ‘reasonable expenses.’ In the UK, the law does not allow surrogates to receive compensation. However, in reality, there may be little difference between the amounts paid to surrogates for profit in the US and those paid to surrogates for reasonable expenses in the UK. We conclude that the issue of surrogacy demands further discussion in Japan. (shrink)

As of 2008, surrogacy is legal and openly practised in various places; Japan, however, has no regulations or laws regarding surrogacy. This paper reports the situation of surrogacy in Japan and in five other regions to clarify the pros and cons of prohibiting surrogacy, along with the problems and issues relating to surrogacy compensation.Not only in a country such as France that completely prohibits surrogacy within the country, but also in a country such as the UK that allows non-commercial surrogacy, (...) infertile couples travel overseas for the purpose of surrogacy. In addition, some couples might seek underground surrogacy if the government prohibits surrogacy. If an intended parent couple and a surrogate make an agreement among themselves and then a problem occurs, they cannot ask for support from professionals or bring a case to court, as can be observed in South Korea and Taiwan.We also conclude that there is little difference between commercial surrogacy and non-commercial surrogacy in the absence of a clear definition of ‘reasonable expenses.’ In the UK, the law does not allow surrogates to receive compensation. However, in reality, there may be little difference between the amounts paid to surrogates for profit in the US and those paid to surrogates for reasonable expenses in the UK. We conclude that the issue of surrogacy demands further discussion in Japan. (shrink)

Since its inception, donor conception practices have been a reproductive choice for the infertile. Past and current practices have the potential to cause significant and lifelong harm to the offspring through loss of kinship, heritage, identity, and family health history, and possibly through introducing physical problems. Legislation and regulation in Australia that specifies that the welfare of the child born as a consequence of donor conception is paramount may therefore be in conflict with the outcomes. Altering (...) the paradigm to a child-centric model, however, impinges on reproductive choice and rights of adults involved in the process. With some lobby groups pushing for increased reproductive choice while others emphasise offspring rights there is a dichotomy of interests that society and legislators need to address. Concepts pertaining to a shift toward a child-centric paradigm are discussed. (shrink)

BackgroundSome persons conceived with donor gametes react negatively when they found their birth via donor conception. They request access to information about and seek to communicate with the donor. However, some countries mandate donor anonymity. Other countries allow donor-conceived persons to access donor information, but they can only use this access if their parents have disclosed donor conception to them. We investigated a thorny issue of donor conception: whether (...) class='Hi'>donor conception should be shifted from an anonymous basis to a non-anonymous basis.MethodsWe review the issues and concerns regarding donor conception. We then consider the impact of direct-to-consumer genetic testing on donor conception, as well as the influence of donor conception on offspring’s identity and the potential of different types of donors. To discuss the future policy of donor conception, the policies on the anonymity of gamete donors were investigated using publicly-available documents in 15 countries.ResultsThe aim of mandating donor anonymity is to protect the privacy of the donor and intended parents. However, the diffusion of direct-to-consumer genetic testing may make it impossible to maintain anonymity. Birth via donor conception shapes the offspring’s identity, and the donor may further influence the development of offspring’s identity through communications. It remains important to disclose donor conception to donor-conceived offspring and to provide them with donor information. However, that information might be insufficient for some donor-conceived persons. Here are benefits to having open-identity donors and known donors. Such donors can make an agreement with the parents regarding future communication with the offspring, although both sides should respect privacy. Subsequent counseling for all parties involved can result in better tripartite communication agreements.ConclusionsIn sum, ethical and practical issues that complicate donor anonymity are driving a shift to non-anonymous donor conception, in which all parties come to a communication agreement. To pave the way for such a donor conception system, transitional measures can be put into place. For countries that already adopted non-anonymous donor conception, ensuring the communication agreements is important to protect the rights of parents, donor, and offspring. (shrink)

One goal of the transplant community is to seek ways to increase the number of people who are willing and able to donate organs. People in states between life and death are often medically excellent candidates for donating organs. Yet public policy surrounding organ procurement is a delicate matter. While there is the utilitarian goal of increasing organ supply, there is also the deontologic concern about respect for persons. Public policy must properly mediate between these two concerns. Currently the dead (...) donor (dd) rule is appealed to as an attempt at such mediation. I argue that given the lack of consensus on a definition of death, the dd rule is no longer successful at mediating utilitarian and deontologic concerns. I suggest instead that focusing on a particular person's history can be successful. (shrink)

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

According to international scientific medical consensus, death is a biological, unidirectional, ontological state of an organism, the event that separates the process of dying from the process of disintegration. Death is not merely a social contrivance or a normative concept; it is a scientific reality. Using this paradigm, the international consensus is that, regardless of context, death is operationally defined as “the permanent loss of the capacity for consciousness and all brainstem function. This may result from permanent cessation of circulation (...) or catastrophic brain injury. In the context of death determination, ‘permanent’ refers to loss of function that cannot resume spontaneously and will not be restored through intervention.” The word “permanent” replaces “irreversible” (used in the United States’ 1980 Uniform Declaration of Death Act) in this new definition, arguably invented to allow donation after circulatory determination of death (DCDD) while still complying with the dead donor rule. I will show that this invention fails, for at least four reasons. (shrink)

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

A case is described of a man who discovered years after donating sperm for artificial insemination, that he had a serious genetic disease, autosomal dominant cerebellar ataxia . This manifests itself only years after puberty and occurs in 50% of the progeny. The sperm had been used for the conception of 18 children in 13 women. The parents were only told three years after the insemination. This long time interval was unavoidable since many of the parents had to be (...) found and the hospital director wished first to discuss the matter with his legal advisors and other experts.In future, in agreement with the new law only 10 inseminations will take place with sperm from one donor. This will reduce still further the availability of donor sperm. (shrink)

Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether (...) offering access to the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: to avoid medical risks and consanguineous relationships; to satisfy curiosity; to learn more about the self or to complete one’s identity; to learn more about what kind of person the donor is ; to form a relationship with the donor and/or his family; and to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is contact with the donor, rather than the mere provision of his name. (shrink)

A case is described of a man who discovered years after donating sperm for artificial insemination, that he had a serious genetic disease, autosomal dominant cerebellar ataxia . This manifests itself only years after puberty and occurs in 50% of the progeny. The sperm had been used for the conception of 18 children in 13 women. The parents were only told three years after the insemination. This long time interval was unavoidable since many of the parents had to be (...) found and the hospital director wished first to discuss the matter with his legal advisors and other experts.In future, in agreement with the new law only 10 inseminations will take place with sperm from one donor. This will reduce still further the availability of donor sperm. (shrink)

What’s the basis for considering an egg donor a genetic parent but not a mitochondrial donor? I will argue that a closer look at the biological facts will not give us an answer to this question because the process by which one becomes a genetic parent, i.e., the process of reproduction, is not a concept that can be settled by looking. It is, rather, a concept in need of philosophical attention. The details of my argument will rest on (...) recent developments in biological technology, but the persuasiveness of my argument will turn on the history of another biological concept, death. Given some important similarities between the two concepts, the way in which ‘death’ evolved in the recent past can provide guidance on how we should think about ‘reproduction.’. (shrink)

: The "dead donor rule" is increasingly under attack for several reasons. First, there has long been disagreement about whether there is a correct or coherent definition of "death." Second, it has long been clear that the concept and ascertainment of "brain death" is medically flawed. Third, the requirement stands in the way of improving organ supply by prohibiting organ removal from patients who have little to lose—e.g., infants with anencephaly—and from patients who ardently want to donate while still (...) alive—e.g., patients in a permanent vegetative state. One argument against abandoning the dead donor rule has been that the rule is important to the general public. There is now data suggesting that this assumption also may be flawed. These findings add additional weight to proposals to abandon the dead donor rule so that organ supply can be expanded in a way that is consistent with traditional notions of ethics, law, public policy, and public opinion. (shrink)

Despite the popularity, success, and growth of programs of organ donation after the circulatory determination of death (DCDD), a long‐standing controversy persists over whether the organ donor is truly dead at the moment physicians declare death, usually following five minutes of circulatory and respiratory arrest. Advocates of the prevailing death determination standard claim that the donor is dead when declared because of permanent cessation of respiration and circulation. Critics of this standard argue that while the cessation of respiration (...) and circulation may be permanent, it may not be irreversible at the moment death is declared because, if cardiopulmonary resuscitation were performed, it might succeed. And because irreversibility of cessation of respiration and circulation is required by both the statute and the biological concept of death, the donor must be alive. Who is correct?Making two related distinctions clarifies the cause of the disagreement over whether the DCDD donor is dead and points to a possible resolution. First, in a determination of death, there is an important distinction between the permanent and the irreversible cessation of circulation and respiration—two associated phenomena that are often confounded. Second, there is an important distinction between the medical practice standard for death determination, in which physicians certify the permanent cessation of vital functions as sufficient for death declaration, and the underlying biological concept of death that requires the irreversible cessation of vital functions because death, by definition, is an irreversible event. (shrink)

Altruism and solidarity are concepts that are closely related to organ donation for transplantation. On the one hand, they are typically used for encouraging people to donate. On the other hand, they also underpin the regulations in force in each country to different extents. They are often used indistinctly and equivocally, despite the different ethical implications of each concept. This paper aims to clarify to what extent we can speak of altruism and solidarity in the predominant models of organ donation. (...) It also raises the ethical question of whether these categories are adequate as a basis for such models, bearing in mind that organs are a scarce resource and that a shortage of them may mean that fewer lives are saved or improved. (shrink)

: American society traditionally has assumed a univocal notion of "death," largely because we have only one word for it and, until recently, have not needed a more nuanced notion. The reality of death-processes does not preclude the reality of death events. Linguistically, "death" can be understood only as an event; there are other words for the process. Our death vocabulary should expand to reflect multiple events along the process from sickness to decomposition. Depending on context, some death-related events may (...) constitute a more obvious discontinuity than others and more justifiably may be considered "death" within that context. There is no reason to assume a priori that there must be an overarching, unitary concept of death from which all diagnostic criteria must derive. Regarding organ transplantation, the relevant question is not "Is the patient dead?" but rather "Can organs X, Y, Z . . . be removed without causing or hastening death or harming the patient?". (shrink)

This paper reviews objections to the proposal to allow parents of anencephalics to donate their infant's organs for transplantation and finds them unpersuasive. Instead, interpretations of ‘Baby Doe’ legislation, a ‘higher-brain’ functional conception of death, the idea of ‘viability’ in many abortion statutes, and the wishes of many patients, give strong support for the proposal for organ transplantation using anencephalics. Keywords: anencephalic, definition of death, transplantation CiteULike Connotea Del.icio.us What's this?

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)

Embryo litigation -- Access to ART treatment : insurance and discrimination -- General professional liability litigation -- Paternity and donor insemination -- Maternity and egg donation -- Traditional and gestational surrogacy arrangements -- Posthumous reproduction : access and parentage -- Same-sex parentage and ART -- Genetics (PGD) and ART -- ART-related embryonic stem cell legal developments -- ART-related adoption litigation -- ART-related fetal litigation and abortion-related litigation.

Since 1968, the irreversible loss of functioning of the whole brain, called brain death, is assimilated to individual’s death. The almost universal acceptance of this neurological criterion of death had decisive consequences for the contemporary medicine, such as the withdrawal of mechanical ventilation in these patients and organ retrieval for transplantation. The new criterion was successfully accepted in part because the assimilation of brain death state to death was presented by medicine --and acritically assumed by most of societies-- as a (...) scientific and objective fact. Nevertheless, many people do not think that the patients suffering brain death are actually dead. We show here that those people are not necessarily wrong. It can be argued that, in fact, the justification of the neurological criterion is not scientific but moral. We outline the thesis that the problem surrounding the vital status of brain dead patients is due to a confusion between factual and normative questions. Furthermore, we claim that the donation of organs and the withdrawal of life-support could be ethically acceptable even if the patients suffering brain death are considered as alive. As an alternative to the dead donor rule, we propose a justification for organ donation of brain-dead patients based on the (moral) concepts of harm and consent : what truly justifies the procurement of organs on those patients is not that they are dead, but that they wish to donate their organs and that, since they have irreversibly lost their brain, they cannot be harmed. (shrink)

Many accounts of the historical development of neurological criteria for determination of death insufficiently distinguish between two strands of interpretation advanced by advocates of a "whole-brain" criterion. One strand focuses on the brain as the organ of integration. Another provides a far more complex and nuanced account, both of death and of a policy on the determination of death. Current criticisms of the whole-brain criterion are effective in refuting the first interpretation, but not the second, which is advanced in the (...) 2008 President's Council report on the determination of death. In this essay, I seek to further develop this second strand of interpretation. I argue that policy on determination of death aligns moral, biological, and ontological death concepts. Morally, death marks the stage when respect is no longer owed. Biologically, death concerns integrated functioning of an organism as a whole. But the biological concepts are underdetermined. The moral concerns lead to selection of strong individuality concepts rather than weak ones. They also push criteria to the "far side" of the dying process. There is a countervailing consideration associated with optimizing the number of available organs, and this pushes to the "near side" of death. Policy is governed by a conviction that it is possible to align these moral and biological death concepts, but this conviction simply lays out an agenda. There is also a prescription—integral to the dead donor rule—that lexically prioritizes the deontic concerns and that seeks to balance the countervailing tendencies by using science-based refinements to make the line between life and death more precise. After showing how these concerns have been effectively aligned in the current policy, I present a modified variant of a "division" scenario and show how an "inverse decapitation problem" leads to a conclusive refutation of the nonbrain account of death. (shrink)

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

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

Background There are several psychosocial and ethical issues surrounding the decision to be a living kidney donor. The present study aimed to determine the perceptions of psychosocial and ethical issues that living kidney donors may have, and analyze their psychological characteristics.Methods Face-to-face semi-structured interviews were conducted with 15 donors. Thematic analysis was then performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board.Results Four main categories were identified: Awareness of family dynamics, (...) barriers to a proper understanding, contrasting psychological effects of recipient presence in clinical practice, insufficient information explained in informed consent.Conclusion Donors felt that they took on the “role as a care giver” for the recipient and were less aware of themselves as patients. This is a new concept that has not been shown in previous studies. Donors exist within the recipient and family, and the range of their autonomy may go beyond the traditional concept of autonomy and be rooted in relational autonomy. This study suggested that medical treatment in the presence of the recipient promotes the relational autonomy of the donor. (shrink)

The dead donor rule states that organ donors must be declared dead before any vital organs are removed. Recently, scholars and physicians have argued for the abandonment of the dead donor rule, based on the rule’s supposed connection with the concept of brain death, which they view as a conceptually unreliable definition of death. In this essay, I distinguish between methods of death determination and the question of whether or not the dead donor rule should be a (...) guiding principle of organ transplant ethics. In principle, the dead donor rule does not rely on any one definition of death, but only prohibits the taking of vital organs before a patient is declared dead. In light of this distinction, I argue that even if the dead donor rule is tied to brain death in practice, conceptual disagreement about brain death does not provide grounds for rejection of this rule. I then present evidence in support of the consistency and reliability of the diagnosis of brain death. I show that, when performed carefully and under specific clinical circumstances, the diagnosis of brain death is considered by most neurologists to be reliable. Finally, I argue that, without the dead donor rule, organ transplantation programs would become susceptible to violations of the ethical principle of respect for persons. (shrink)

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)

The basic question concerning the compatibility of donation after circulatory death (DCD) protocols with the dead donor rule is whether such protocols can guarantee that the loss of relevant biological functions is truly irreversible. Which functions are the relevant ones? I argue that the answer to this question can be derived neither from a proper understanding of the meaning of the term “death” nor from a proper understanding of the nature of death as a biological phenomenon. The concept of (...) death can be made fully determinate only by stipulation. I propose to focus on the irreversible loss of the capacity for consciousness and the capacity for spontaneous breathing. Having accepted that proposal, the meaning of “irreversibility” need not be twisted in order to claim that DCD protocols can guarantee that the loss of these functions is irreversible. And this guarantee does not mean that reversing that loss is either conceptually impossible or known to be impossible with absolute certainty. (shrink)

This article addresses whether cardiopulmonary resuscitation and sustained physiological support should ever be permitted in individuals who are diagnosed as brain dead and who had held previously expressed moral or religious objections to the currently accepted criteria for such a determination. It contrasts how requests for care would normally be treated in cases involving a brain-dead individual with previously expressed wishes to donate and a similarly diagnosed individual with previously expressed beliefs that did not conform to a brain-based conception (...) of death. The paper first focuses narrowly on requests for CPR and then expands its scope to address extended physiological support. It describes how refusing the brain-dead non-donor's requests for either CPR or extended support would represent enduring harm to the antemortem or previously autonomous individual by negating their beliefs and self-identity. The paper subsequently discusses potential implications of policy that would allow greater accommodations to those with conscientious objections to currently accepted brain-based death criteria, such as for cost, insurance, higher brain formulations and bedside communication. The conclusion is that granting wider latitude to personal conceptions around the definition of death, rather than forcing a contested definition on those with valid moral and religious objections, would benefit both individuals and society. (shrink)

The conception of saviour siblings using preimplantation genetic diagnosis coupled with human leukocyte antigen typing or HLA typing alone is controversial and receives a wide divergence of legal responses among countries around the world. The resulting child conceived through this procedure is dubbed a ‘saviour sibling’ as the child can potentially act as a compatible donor for an elder ailing sibling who needs a haematopoietic stem cell transplantation. At present, the acceptability of this procedure in Malaysia is ambiguous (...) as there is no specific statute governing assisted reproductive technology, and the guideline issued by the Malaysian Medical Council does not expressly address this issue. The ethical arguments relating to the conception of saviour siblings in the current literature are mainly thought to reflect a liberal viewpoint which is predominantly Western in nature. This paper seeks to explore the perception of selected key stakeholders on the acceptability of and ethical concerns related to this procedure in the Malaysian context. The findings indicate that stakeholders generally support the conception of saviour siblings and some of their concerns echo the Western viewpoint. Interestingly, many were highly anxious about its economic implication, which is rarely discussed in the current literature on saviour siblings. (shrink)

The basic question concerning the compatibility of donation after circulatory death protocols with the dead donor rule is whether such protocols can guarantee that the loss of relevant biological functions is truly irreversible. Which functions are the relevant ones? I argue that the answer to this question can be derived neither from a proper understanding of the meaning of the term “death” nor from a proper understanding of the nature of death as a biological phenomenon. The concept of death (...) can be made fully determinate only by stipulation. I propose to focus on the irreversible loss of the capacity for consciousness and the capacity for spontaneous breathing. Having accepted that proposal, the meaning of “irreversibility” need not be twisted in order to claim that DCD protocols can guarantee that the loss of these functions is irreversible. And this guarantee does not mean that reversing that loss is either conceptually impossible or known to be impossible with absolute certainty. (shrink)

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. (...) Genes make sense on an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members. (shrink)

This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas (...) of our staff participants. We explore the views of our study participants in relation to two themes: (1) rights to information and anticipating how donors might be informed about future research findings and (2) occupational work goals and trust. (shrink)

There is a long-standing debate concerning the eligibility of patients suffering from alcohol-related end-stage liver disease (ARESLD) for deceased donor liver transplantation. The question of retrospective and/or prospective responsibility has been at the center of the ethical discussion. Several authors argue that these patients should at least be regarded as partly responsible for their ARESLD. At the same time, the arguments for retrospective and/or prospective responsibility have been strongly criticized, such that no consensus has been reached. A third option (...) was proposed as a form of compromise, namely that responsibility should only be used as a tiebreaker in liver allocation. The present study provides an ethical investigation of this third option. First, we will provide an overview of the main arguments that have been offered for and against the use of responsibility as an allocation criterion. Second, we will explore the concept of responsibility as a tiebreaker in detail and discuss several types of situations, in which responsibility could be used as a tiebreaker, as well as the main ethical challenges associated with them. As we will show, an ethical justified use of responsibility as a tiebreaker is limited to a very restricted number of cases and is associated with a number of ethical concerns. For this reason, waiting time should be preferred as a tiebreaker in liver allocation, even though the criterion of waiting time, too, raises a number of equity-related concerns. (shrink)