ABSTRACTBrazil has not yet approved legislation on assisted reproduction. For this reason, clinics, hospitals and semen banks active in the area follow Resolution 1358/92 of the Conselho Federal de Medicina, dated 30 September 1992. In respect to semen donation, the object of this article, the Resolution sets out that gamete donation shall be anonymous, that is, that the donor and recipients shall not be informed of each other's identity. Thus, since recipients are unaware of the donor's identity, semen (...) banks and the medical teams involved in assisted reproduction become the intermediaries in the process. The objective of this article is to show that, in practice, this represents disrespect for the ethical principles of autonomy, privacy and equality. The article also stresses that the problem is compounded by the racial question. In a country like Brazil, where racial classification is so flexible and goes side by side with racist attitudes, the intermediary role played by semen banks and medical teams is conditioned by their own criteria of racial classification, which are not always the same as those of donors and semen recipients. The data presented in this paper were taken from two semen banks located in the city of São Paulo . At the time of my research, they were the only semen banks in the state of São Paulo and supplied semen to the capital , the state of São Paulo, and to cities in other Brazilian states where semen banks were not available. (shrink)

This article reads the uptake of facial-matching algorithms by fertility clinics in Spain through the lens of ‘the fertility fix’: a software fix to the social reconfiguration of kinship and a fixed capital investment made by competing fertility companies and firms. ‘The fertility fix’ is proposed as a critical, ethical lens through which to situate algorithmic facial-matching in assisted reproduction in the context of the racial politics of the face and phenotype and the spatial politics of market expansion. While an (...) ‘infertility crisis’ is often mentioned when explaining the growth of the assisted reproductive technologies (ARTs) industry, the use of donated reproductive cells is tied up in societal, ecological and economic shifts. Combining Software Studies analysis with Marxist Feminist and trans*feminist perspectives on shifting re/production dynamics, the article details the role of computational technologies in promoting certain ideas and beliefs about family and fixing certain territories of capital flow. (shrink)

This article reads the uptake of facial-matching algorithms by fertility clinics in Spain through the lens of ‘the fertility fix’: a software fix to the social reconfiguration of kinship and a fixed capital investment made by competing fertility companies and firms. ‘The fertility fix’ is proposed as a critical, ethical lens through which to situate algorithmic facial-matching in assisted reproduction in the context of the racial politics of the face and phenotype and the spatial politics of market expansion. While an (...) ‘infertility crisis’ is often mentioned when explaining the growth of the assisted reproductive technologies (ARTs) industry, the use of donated reproductive cells is tied up in societal, ecological and economic shifts. Combining Software Studies analysis with Marxist Feminist and trans*feminist perspectives on shifting re/production dynamics, the article details the role of computational technologies in promoting certain ideas and beliefs about family and fixing certain territories of capital flow. (shrink)

This paper deals with a problem which has received a great deal of attention in the ethical literature, but about which very little is known empirically: the selection of recipients for organs in transplant medicine. Based on a larger study, it is shown how this problem is practically resolved in one European country, Germany. It is demonstrated that most of the criteria used to determine recipients are non-medical in nature, even though they generally tend to be rationalized in medical (...) terms. Moreover, the choice of criteria depends as much on prognostic considerations as on personal indiosyncrasies and values held by individual physicians who are in charge at the various programs. Several examples of the extremely diverse policies in which this results are presented. (shrink)

There has been a great deal of discussion about the ethical implications of donating sperm and of the ways in which donated tissue is presented, selected, and sold for use in assisted reproduction. Debates have emerged within the academic sphere, from donor offspring and recipients, and in broader popular culture, including questions about the commodification of human tissue and the eugenic potential of selecting donors from particular demographic categories. However, the voices of donors themselves on this subject have been (...) largely silent. This paper draws on data from qualitative interviews with men who donated at a major Danish sperm bank between 2012 and 2013. It argues that many of them are indeed thinking through these complex issues. Donors’ approaches to ethical issues fell into two broad ‘types’: a pragmatic, individualistic approach which focused on more immediate personal consequences, and an ethically-driven approach in which donors considered the impact of donation on offspring and on a wider societal level. (shrink)

This paper is concerned with only one of the problems encountered in selecting donors for artificial insemination, that of choosing suitable donors. In Belgium medical students have generally been the donors of semen but Dr Schoysman examines the other choices of potential donors and outlines certain criteria for selecting them: these criteria are more explicit than those outlined by Professor Kerr and Miss Rogers on page 32. He also touches on the question of payment to donors.

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)

Blood service organizations employ various ways to ensure transfusion blood safety, including the testing of all donations for transfusion-transmissible infections (TTI) and the exclusion of donors who are at increased risk of a recent infection. As some TTIs are more common among men who have sex with men (MSM), many jurisdictions (temporarily) defer the donation of blood by sexually active MSM. This boils down to a categorical exclusion of a large group solely on the basis of their sexual orientation, which (...) is seen as unduly discriminatory and stigmatizing. Blood service organizations in the U.K. and the Netherlands have recently changed their deferral policies for MSM. The problem of the MSM deferral involves a conflict between fundamental rights: the right of MSM to equal treatment and the right to health of the recipients of blood and blood products. We distinguish and discuss three broad alternative options to the current categorical deferral of MSM donations: (1) completely abandoning donor selection on the basis of sexual behavior, (2) individual risk assessment of the sexual activities of each potential donor, and (3) individual risk assessment of the sexual activities of MSM only. The new U.K. policy falls within the second category, and the new Dutch policy is in the third category. We argue that each approach comes with moral costs but that the most reasonable option is different from the policies of both the U.K. and the Netherlands. (shrink)

Many global and national systems of regulation of blood donors and donor compensation rely for intellectual support on Richard Titmuss’s views, represented in The Gift Relationship. Based on selective interpretation of data from the 1960s, Titmuss engineered an ethical view pertaining to donors and, in so doing, created not only ongoing stereotypes, but created a cause for followers to perpetuate misunderstandings about the nature of such donations. In many cases, donors are, in fact compensated, but regulatory systems persevere in (...) using definitional fig leaves in order to perpetuate an ongoing political goal of diminishing private sector participation in health care. However, in more recent works, including new views of critical sociology and evolutionary psychology, the Titmuss worldview has been turned upside-down. Evidence readily available today proves the safety of compensated donation and the lives saved by encouraging policies for both compensated and non-compensated donation. (shrink)

As the demand for human eggs for stem cell research increases, debate about appropriate standards for recruitment and compensation of women intensifies. In the majority of cases, the source of eggs for research is women undergoing fertility treatment requiring ovarian stimulation and egg retrieval. The principle of "just participant selection" requires that research subjects be selected from the population that stands to benefit from the research. Based on this principle, infertile women should be actively recruited to donate eggs for (...) fertility-related research only. It is unethical to exclusively or predominantly recruit infertile women to donate eggs for stem cell research that concerns general medical conditions. It is preferable to recruit women from the general population to donate eggs for such research, and these women should be viewed as healthy volunteers. To avoid exploitation, these donors should receive compensation for both the direct and indirect costs associated with their donation. (shrink)

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

The surviving pictorial hagiographical cycles of St Panteleimon were executed in the period between the 10th and 15th centuries. The most elaborate one is on a vita icon, consisting of sixteen scenes, at the monastery of St Catherine, Mt. Sinai and is at the centre of this research. The painter used the Passion of St Panteleimon by Symeon Metaphrastes as a main textual source for its creation. In addition, we may presume that the iconography of the images was influenced by (...) other existing pictorial cycles of the life of the saint. Also, the selection of the images, included in the saint's cycle, reflects the devotional needs and wishes of the unknown donor. (shrink)

Blood service organizations employ various ways to ensure transfusion blood safety, including the testing of all donations for transfusion-transmissible infections (TTI) and the exclusion of donors who are at increased risk of a recent infection. As some TTIs are more common among men who have sex with men (MSM), many jurisdictions (temporarily) defer the donation of blood by sexually active MSM. This boils down to a categorical exclusion of a large group solely on the basis of their sexual orientation, which (...) is seen as unduly discriminatory and stigmatizing. Blood service organizations in the U.K. and the Netherlands have recently changed their deferral policies for MSM. The problem of the MSM deferral involves a conflict between fundamental rights: the right of MSM to equal treatment and the right to health of the recipients of blood and blood products. We distinguish and discuss three broad alternative options to the current categorical deferral of MSM donations: (1) completely abandoning donor selection on the basis of sexual behavior, (2) individual risk assessment of the sexual activities of each potential donor, and (3) individual risk assessment of the sexual activities of MSM only. The new U.K. policy falls within the second category, and the new Dutch policy is in the third category. We argue that each approach comes with moral costs but that the most reasonable option is different from the policies of both the U.K. and the Netherlands. (shrink)

For now, the best way to select a child's genes is to select a potential child who has those genes, using genetic testing and either selective abortion, sperm and egg donors, or selecting embryos for implantation. Some people even wish to select against genes that are only mildly undesirable, or to select for superior genes. I call this selection drift– the standard for acceptable children is creeping upwards. The President's Council on Bioethics and others have raised the parental love (...) objection: Just as we should love existing children unconditionally, so we should unconditionally accept whatever child we get in the natural course of things. If we set conditions on which child we get, we are setting conditions on our love for whatever child we get. Although this objection was prompted by selection drift, it also seems to cover selecting against genes for severe impairments. I argue that selection drift is not inconsistent with the ideal of unconditional parental love and, moreover, that the latter actually implies that we should practise selection drift – in other words, we should try to select potential children with the best genetic endowments. My endowment argument for the second claim works from an analogy between arranging an endowment prior to conception to fund a future child's education, and arranging a genetic endowment by selecting a potential child who already has it, where in both cases the child would not have existed without the endowment. I conclude with some programmatic remarks about the nonidentity problem. (shrink)

Professor Dunstan has selected certain aspects of the preceding papers on artificial insemination by donor and subjected these to the scrutiny of a moral theologian.

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

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

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)

Corneal transplantation is the most common form of organ transplantation performed globally. However, of all organs, eyes have the highest rate of refusal of donation. This study explored the reasons why individuals decide whether or not to donate corneas. Twenty-one individuals were interviewed who had made a donation decision (13 refused corneal donation and eight consented). Analysis was performed using Grounded Theory. Refusal of corneal donation was related to concerns about disfigurement and the role of eyes in memory and communication. (...) The request for donation therefore raised concerns about a potential adverse change in the ongoing relationship with the deceased, even in death. For those who refused donation, these concerns overshadowed awareness of need or benefit of transplantation. Adjusting the donation message to be more congruent with the real, lived experience of corneal donation may to some extent “prepare” individuals when the donation question is raised. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

The United States has become an ideal marketplace for those seeking selective technologies that are illegal, inaccessible, or unavailable in their own countries. Specifically, technologies such as commercial egg donation, preimplantation genetic diagnosis, and sex selection are prohibited or highly regulated in many nations, but remain legal and largely unregulated in the United States. Based on in-depth interviews with US fertility industry providers, including physicians and egg donor and surrogate brokers, this article analyzes how the ideologies of genetic (...) determinism and consumer choice are embedded in the industry. These are transformed into competitive advantages that may appeal to foreign nationals unable to acquire the technologies, services, and reproductive materials to which they feel entitled. Regardless of providers’ particular attitudes regarding the uses of selective technologies, their overall practice reinforces intended parents’ desires to have some control over their potential children’s appearance, temperament, abilities, and behavior. Despite other nations’ laws and policies, ideologies supportive of the use of selective technologies do not, obviously, end at the US borders, and the globalization of communications, media, and transportation technologies enable their spread. (shrink)

With the continued expansion and commercialisation of fertility treatments, the selection and matching of donors have become more sophisticated and technologised. As part of this landscape, new form of genetic screening: ‘expanded carrier screening’ (ECS) is being offered as a technique to avoid the risk of donors passing on genetic conditions to future offspring. Allowing donors to be tested for hundreds of genetic conditions simultaneously, ECS marks a considerable departure from traditional ‘family history’ models of screening, which rely on (...) an individual's knowledge of family health. There is growing evidence of a drive towards the use of ECS within the fertility sector, and a growing number of clinics are offering it for a fee, as part of an egg or sperm donation cycle or as an add‐on to IVF treatment. In this article, we use methods of critical reflection to synthesise data from two studies to explore how ECS is being used to avoid genetic risk in IVF treatment using donor gametes. We suggest that ECS is a new form of repro‐genetic selection—a selective reproductive technology—with specific and important implications for donors, recipients and clinicians and with the potential to reconfigure the scope and application of gamete donation. We examine these implications and conclude that the existing policy blind spot relating to this development in fertility treatment practice needs to be urgently addressed. (shrink)

With aims to both increase organ supply and better reflect individual donation preferences, many nations worldwide have shifted from ‘opt‐in’ to ‘opt‐out’ systems for post‐mortem organ donation (PMOD). In such countries, while a prospective donor's willingness to donate their organs/tissues for PMOD was previously ascertained—at least partially—by their having recorded positive donation preferences on an official register prior to death, this willingness is now presumed or inferred—at least partially—from their not having recorded an objection to PMOD—on an official organ (...) donation register. Using evidence regarding the presence and prevalence of selective donation preferences, and via exploration of how appeals to donation preferences are used to both motivate and legitimate shifts to opt‐out frameworks, this paper draws attention to a set of previously unexplored problems for opt‐out organ donation arising in contexts where: (a) individuals demonstrate selective post‐mortem organ/tissue donation preferences, (b) legislation provides prospective donors with the opportunity to selectively permit/refuse the donation of certain organs/tissues in line with these preferences. While selective preferences pose few problems for opt‐in systems where a selective occasion is built into the process of signing the donor register, this is not the case for opt‐out systems. The loss of this selective occasion can cause significant problems where appeals to preferences motivate/legitimate shifts to opt‐out but evidence regarding variable preferences does not feed into determinations regarding organ/tissue exclusions. The nature of these problems depends on how the authorization aspect of ‘opt‐out’ systems is framed (e.g. as presumed consent, deemed consent or, given the role of familial consent in many jurisdictions as consent in name only). (shrink)

The recent advances in assisted reproductive technology, such as hormonal stimulation, IVF, and intracytoplasmic sperm injection (ICSI), have made it possible to circumvent many causes of male and female factor infertility. However, uterine infertility is still considered an ‘‘unconditionally infertile’’ condition. Owing to the continued advances in organ transplantation, microvascular anastomosis techniques, and immunosuppressive medicine, the transplantation of organs is no longer restricted to the ones necessary for continued life. Quality-of-life enhancing types of transplantation, such as uterine transplantation, in recent (...) years, have also entered the clinical arena. This undoubtedly brings new hope to such women, but also creates ethical challenges. Selection of the donor, the impact on the recipient and offspring, as well as challenges to moral and social norms are issues that cannot be ignored. In the present review, the ethical issues of transplantation of the uterus will be discussed in light of recent progress in the procedure. (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)

Here I critique the approach often seen in bioethics, termed "Chicken Little bioethics," which emphasizes only the potential risks of novel therapies, using fecal microbiota transplant (FMT) as a case study. I argue that, instead of cataloging hypothetical risks, bioethicists should focus on establishing an ethical framework for FMT based on justice, beneficence, nonmaleficence, and autonomy. The essay advocates for empirical risk-benefit analysis through initiatives like the FMT registry, which tracks patient outcomes to better assess the actual risks and benefits (...) compared to antibiotic alternatives. Additionally, I address challenges related to informed consent, donor selection, and access to FMT, underscoring the need for balanced policies that consider both patient safety and the equitable availability of this promising therapy. In the end, I call for a regulatory approach that fosters responsible innovation while allowing FMT and similar bacteriotherapies to be integrated safely and effectively into medical practice. (shrink)

The selection and balancing of values for the Eurotransplant kidney allocation algorithm poses both practical and ethical challenges. The paper argues that any allocation algorithm can only be justified by reference to some substantive conception of a good life that reflects our value preferences regarding the allocation of scarce donor kidneys. It is concluded that the criterion of HLA compatibility maximizes overall rather than individual utility. The paper emphasizes that good pragmatic arguments for maintaining the primacy of HLA (...) matching can never replace a more systematic, independent ethical justification. As neither the selection nor the balancing of the different allocation criteria are based on an explicit ethical justification, the paper concludes that the choice of the Wujciak-algorithm was rather a product of pragmatic compromise than moral consensus. (shrink)

Donor conceived persons are likely to have a lower quality of life than persons who are genetically related to both parents. Empirical evidence is presented to corroborate this point. The evidence is subdivided into three sections: (1) negative experience of the donor conception itself, (2) negative effects of secrecy and openness and (3) negative effects of donor anonymity and donor identifiability. The principle of procreative beneficence requires parents to select the child with the best possible life. (...) Given the difference in quality of life, intended parents should try to have a genetically related child. This finding is also a strong reason for society to invest public resources in the development of techniques that enable people to create genetically related children. (shrink)

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical (...) risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. (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)

There is a trend of recruiting faith leaders at mosques to overcome religious barriers to organ donation, and to increase donor registration among Muslims. Commentators have suggested that Muslims are not given enough information about organ donation in religious sermons or lectures delivered at mosques. Corrective actions have been recommended, such as funding campaigns to promote organ donation, and increasing the availability of organ donation information at mosques. These actions are recommended despite published literature expressing safety concerns (i.e., do (...) no harm) in living and end-of-life organ donation. Living donors require life-long medical follow-up and treatment for complications that can appear years later. Scientific and medical controversies persist regarding the international guidelines for death determination in end-of-life donation. The medical criteria of death lack validation and can harm donors if surgical procurement is performed without general anesthesia and before biological death. In the moral code of Islam, the prevention of harm holds precedence over beneficence. Moral precepts described in the Quran encourage Muslims to be beneficent, but also to seek knowledge prior to making practical decisions. However, the Quran also contains passages that demand honesty and truthfulness when providing information to those who are seeking knowledge. Currently, information is limited to that which encourages donor registration. Campaigning for organ donation to congregations in mosques should adhere to the moral code of complete, rather than selective, disclosure of information. We recommend as a minimal standard the disclosure of risks, uncertainties, and controversies associated with the organ donation process. (shrink)

Definition of the problem The creation and selection of children as tissue donors is ethically controversial. Critics often appeal to Kant’s Formula of Humanity, i.e. the requirement that people be treated not merely as means but as ends in themselves. As many defenders of the procedure point out, these appeals usually do not explain the sense of the requirement and hence remain obscure. Arguments This article proposes an interpretation of Kant’s principle, and it proposes that two different instrumental stances (...) be distinguished. I argue that the creation of “saviour children” is a form of instrumentalization that I dub “preemptive instrumentalization” and that it is categorically different from earlier forms of instrumental attitudes concerning human reproduction. Conclusion Critics are wrong to claim that Kant’s principle is either compatible with the selection of saviour siblings or too vague to serve as an ethical principle. (shrink)

This article refers to selected issues elaborated from my interdisciplinary doctoral thesis accomplished at the University of South Africa in 2019. I investigated the ethical-theoretical frameworks as well as practices of Christian humanitarian non-governmental organisations in Germany by combining a theoretical part and an empirical part. The empirical part was accomplished by interviewing 11 NGOs from the humanitarian field. The findings of theory and practice showed that many Christian NGOs typically conform to the secular mindset and regulations in order to (...) be able to function as organisations. The results also revealed that Christian NGOs have difficulties in defining their identity in order to be attractive and convincing to their current and prospective employees and donors. In addition, organisational and hierarchical structures are mostly taken from business companies but do not necessarily always fit to the individual organisations. The research is significant because it shows to what extent these NGOs experience tensions and insecurities having to work in a secular environment, and it helps to identify some typical challenges that Christian organisations face in Western countries. The purpose of the thesis was to impact on the reflection and practice of leaders of NGOs in their quest to understand developments and paradigm shifts, and ensure that they will act in a recognisably Christian way.Contribution: This article has been held as a presentation at the Leadership Conference in Pretoria, South Africa, in 2019. It contributes to the research of specific Christian leadership, and particularly of leadership in Christian non-governmental organisations. This article aims to describe the challenges these organisations face, having to work in the midst of a secular environment. (shrink)

Donors, scientists and farmers all benefit when research and development projects have high impact. However, potential benefits are sometimes not realized. Our objective in this study is to determine why resource-poor farmers in Togo (declined to) adopt recommended practices that were promoted through a multi-organizational project on soil fertility management. We examine the processes and outcomes related to the adoption process. The project was undertaken in three villages in the Central Region of Togo in West Africa. The development and research (...) processes that took place during the implementation of the project were critically analyzed using a conceptual framework that may be useful for improving the impact of future participatory projects. At the macro level, opportunities for innovation were not deliberately explored with participating farmers and other village members; consequently “pre-analytical choices” made during the planning phase resulted in practices that resource-poor farmers were, for a variety of reasons, unable or unwilling to adopt. From the outset, donors and scientists focused on soil fertility management, but failed to take into account the wider economic context within which soil fertility management took place. This was a major obstacle to the subsequent adoption of recommended management strategies. Scientists and donor partners measured the success of the Project in terms of crop productivity, but farmers’ choices were influenced by a complex mix of socio-economic, political and technical factors. We also illustrate the importance of selecting appropriate categories of farmers for a particular experiment. We conclude that for participatory research and development projects to be successful, it is not enough to develop technologies that “work” in a technical sense. In order to be scaled up and widely implemented, such technologies must also meet a variety of needs of resource-poor farmers and be acceptable from a socio-cultural point of view. (shrink)

Although analogical reasoning has long been a popular method of reasoning in bioethics, current literature does not sufficiently grasp its variety. We assert that the main shortcoming is the fact that an analogy's value is often judged on the extent of similarity between the source situation and the target situation, while in (bio)ethics, analogies are often used because of certain dissimilarities rather than in spite of them. We make a clear distinction between dissimilarities that aim to reinforce a similar approach (...) in the source situation and the target situation and dissimilarities that aim to undermine or denounce a similar approach. The former kind of dissimilarity offers the analogy more normative force than if there were no dissimilarities present; this is often overlooked by authors who regard all relevant dissimilarities as detrimental to the analogy's strength. Another observation is that an evaluation of the normative force of an analogy cannot be made independently of moral principles or theories. Without these, one cannot select which elements in an analogy are morally relevant nor determine how they should be interpreted. (shrink)

The transfer of food among group members is a ubiquitous feature of small-scale forager and forager-agricultural populations. The uniqueness of pervasive sharing among humans, especially among unrelated individuals, has led researchers to evaluate numerous hypotheses about the adaptive functions and patterns of sharing in different ecologies. This article attempts to organize available cross-cultural evidence pertaining to several contentious evolutionary models: kin selection, reciprocal altruism, tolerated scrounging, and costly signaling. Debates about the relevance of these models focus primarily on the (...) extent to which individuals exert control over the distribution of foods they acquire, and the extent to which donors receive food or other fitness-enhancing benefits in return for shares given away. Each model can explain some of the variance in sharing patterns within groups, and so generalizations that ignore or deny the importance of any one model may be misleading. Careful multivariate analyses and cross-cultural comparisons of food transfer patterns are therefore necessary tools for assessing aspects of the sexual division of labor, human life history evolution, and the evolution of the family. This article also introduces a framework for better understanding variation in sharing behavior across small-scale traditional societies. I discuss the importance of resource ecology and the degree of coordination in acquisition activities as a key feature that influences sharing behavior. (shrink)

BackgroundBiobanking provides exciting opportunities for research on stored biospecimens. However, these opportunities to advance medical science are fraught with challenges including ethical and legal dilemmas. This study was undertaken to establish perspectives of South African stakeholders on the ethico-legal dimensions of biobanking.MethodsAn in-depth exploratory study was conducted with 25 purposively selected biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee (REC) members in South Africa. Potential study participants were recruited through known hubs for biobanking in the country, (...) online searches and the snowball sampling technique. A semi-structured face-to-face or Skype interview was arranged. Data was analysed using thematic analysis.ResultsThe emergent themes included: inconsistency in understanding consent models, disconnect between biobank researchers and biosample donors, inadequate processes to support re-consenting minors, inconsistent governance processes for biobanking research; challenges with sample and data sharing, and suboptimal strategies for benefit sharing and return of results. Biobanking practice in general appeared to be inconsistent and fragmented. While the need for consent in research is explicitly outlined in legislative documents, some respondents were unclear on the type of consent model to apply in biosample collection. They also reported inconsistencies in research participants’ understanding of consent. Furthermore, these respondents’ own understanding of consent and consent models were dependent on where they were positioned in biobanking practice (roles occupied). Respondents were unsure about the process to follow to re-consent child participants once the age of majority (≥ 18 years) was reached. It was not surprising that consent was identified as one of the major ethical challenges in biobanking practice. In certain settings, some respondents reported suboptimal governance processes for sample collection. Participants were generally unsure about how to operationalise benefit sharing and how to approach the idea of returning results to research participants and biobank donors.ConclusionThe study findings indicated inconsistencies in stakeholder understanding of ethico-legal considerations related to biobanking in South Africa. A need for ongoing ethics capacity development among stakeholders was identified. Improving understanding of the ethics of biobanking could be facilitated by acknowledging the disconnect created by biosamples in the relationship between biobank researchers and donors. (shrink)

BACKGROUND: The availability of costly safety measures against transfusion-transmissible infections forces Western countries to confront difficult ethical questions. How to decide about implementing such measures? When are such decisions justified? As a preliminary to addressing these questions, we assessed which concerns shape actual donor blood safety policymaking in five Western countries. STUDY DESIGN AND METHODS: Our qualitative study involved determining which issues had been discussed in advisory committee meetings and capturing these issues in general categories. Appropriate documents were identified (...) in collaboration with local decision-making experts in Canada, Germany, the Netherlands, the United States, and the United Kingdom. The introduction of hepatitis B virus nucleic acid testing and selected measures against variant Creutzfeldt-Jakob disease, West Nile virus, and Q-fever were chosen as cases representing decision-making on safety measures with high costs and low or uncertain added safety. RESULTS: A broad inventory of concerns was established, including: 1) nine categories of advantages and disadvantages of candidate safety policies; 2) six kinds of difficulties in assessing risks and forecasting the effects of safety policies; 3) 13 decision-making principles; and 4) six kinds of practical barriers hampering the translation of candidate policies into decisions. CONCLUSION: Blood safety policymaking involves a wide variety of competing concerns, and approaches to reconcile these considerations are themselves contested. Developing a systematic decision-making approach requires ethical reflection on, among others, reasonable costs of safety and the value of transparency in public policy. (shrink)

Fecal microbiota transplantation has demonstrated efficacy and is increasingly being used in the treatment of patients with recurrent Clostridium difficile infection. Despite a lack of high-quality trials to provide more information on the long-term effects of FMT, there has been great enthusiasm about the potential for expanding its applications. However, FMT presents many serious ethical and social challenges that must be addressed as part of a successful regulatory policy response. In this article, we draw on a sample of the scientific (...) and bioethics literatures to examine clusters of ethical and social issues arising in five main areas: informed consent and the vulnerability of patients; determining what a “suitable healthy donor” is; safety and risk; commercialization and potential exploitation of vulnerable patients; and public health implications. We find that these issues are complex and worthy of careful consideration by health care professionals. Desperation of a patient should not be the basis for selecting treatment with FMT, and the patient's interests should always be of paramount concern. Authorities must prioritize development of appropriate and effective regulation of FMT to safeguard patients and donors, promote further research into safety and efficacy, and avoid abuse of the treatment. (shrink)

This Article considers the moral and legal status of practices that aim to modify traits in human offspring. As advancements in reproductive biotechnology give parents greater power to shape the genetic constitution of their children, an emerging school of legal scholars has ushered in a privatized paradigm of genetic control. Commentators defend a constitutionally protected right to prenatal engineering by appeal to the significance of procreative liberty and the promise of producing future generations who are more likely to have their (...) lives go well. This 'new eugenics,' however, confronts us with ethical challenges that neither liberal arguments about autonomy, fairness, and consent, nor utilitarian arguments about preferences, happiness, and equality, are able to capture. I begin by analyzing the Supreme Court's modern substantive due process jurisprudence, as it bears on recent advancements and controversies in genetic science. After developing a doctrinal framework that could support an asserted right to genetic engineering, I draw on empirical research in behavioral psychology to examine the influence of eugenic norms on egalitarian attitudes and institutions. I predict that if parents become accustomed to choosing the genes of their children, it would be radically more difficult to give an influential account for why the successful should adopt a charitable posture toward those who are less fortunate. I argue that by shifting control over offspring DNA from chance to choice, enhancement will inflate a sense of individual entitlement for social and economic outcomes. I conclude that increasing willingness to prevent the birth of abnormal children distracts attention from institutions that fail to accommodate the limitations of imperfect people. Some may reply that producing people who better fit the roles society chooses to reward need not deter us from providing for people whose abilities fail to meet the demands of modern society. However, this reply misses the way that changes in reproductive practices can bring about changes in the way that we understand our identities and relationships. Eugenic solutions to social problems such as poverty, crime, and unemployment reshape the challenge of genetic disadvantage so that it is no longer one we address through collective measures such as public education, social services, and income redistribution, and instead becomes one for individual parents to prevent through donor screening, embryo discard, or selective abortion. (shrink)

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse. This (...) analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child’s right to know. (shrink)

Two experiments investigated whether moral evaluations of organ transplantation influence judgments of death and causation. Participants’ beliefs about whether an unconscious organ donor was dead and whether organ removal caused death in a hypothetical vignette varied depending on the moral valence of the vignette. Those who were randomly assigned to the good condition were more likely to believe that the donor was dead prior to organ removal and that organ removal did not cause death. Furthermore, attitudes toward euthanasia (...) and organ donation independently predicted judgments of death and causation, regardless of experimental condition. The results are discussed in light of the framework of motivated reasoning, in which motivation influences the selection of cognitive processes and representations applied to a given domain, as well as Knobe’s person-as-moralist model, in which many basic concepts are appropriately imbued with moral features. On either explanatory framework, these data cast doubt on the psychological legitimacy of the mainstream justification for vital organ procurement from heart-beating donors, which holds that neurological criteria for death are scientifically justified, independently of concerns about organ transplantation. These data suggest that, rather than concluding that organ removal is permissible because the donor is dead, people may believe that the donor is dead because they believe organ removal to be permissible. (shrink)

We should react to deaf parents who choose to have a deaf child with compassion not condemnationThere has been a great deal of discussion during the past few years of the potential biotechnology offers to us to choose to have only perfect babies, and of the implications that might have, for instance for the disabled. What few people foresaw is that these same technologies could be deliberately used to ensure that children would be born with disabilities. That this is a (...) real possibility, and not merely the thought experiment of a philosopher, is brought home to us by the decision of an American lesbian couple to select a deaf sperm donor in order to maximise the chances that their children, Jehanne and Gauvin, would be deaf like them.1 Their choice has sparked controversy, not only among medical ethicists, but in the opinion pages of newspapers across the world. Ought parents be permitted to make such choices?If the parents of Jehanne and Gauvin have done anything wrong, it must consist in violating their child’s right to an open future—limiting its future potential for choice.2 But what does it mean to respect this right?From the moment a child is born, her parents are making choices for her, which will powerfully shape her future. They will decide what kind of education she will have, what religious experiences, from among what group she can select friends. Thereby, they profoundly mould the person she will be and the life she will have.When this activity is carried out within certain, ill-defined, limits, it is in no way objectionable. It is not merely a …. (shrink)

Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors’ participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most (...) important thematic issues of information are to be given to the biobank participants and how this information should be presented in the consent documents. For these purposes, we analyse consent documents from 14 biobanks in 11 countries for six ethically relevant issues: (1) model of consent, (2) scope of future research, (3) access to medical data, (4) feedback to the participants, (5) consent withdrawal, and (6) role of research ethics committee. In order to compare different trends of informing donors of human biological material and medical data, we interpret the six analysed issues in the context of respect to donor’s autonomy paradigm. Although the results of the paper reflect the heterogeneity of biobank consent document policies applied in different European countries, we uncovered some trends and suggested several examples of good practices to balance the interests of the donors with those of the researchers and future patients. (shrink)

& A college development officer is offered a generous gift by a donor whose identity would embarrass the institution. Should the development officer accept? & A volunteer lies about his level of giving, but classmates believe him and match his "gift." Should donors be told the truth? & A development officer must explain to a donor the difference between naming an endowed chair and selecting the person to fill the chair. Where is the line between reasonable donor (...) expectations and intrusion? "There was a time, barely a generation ago, when most college fund raising was a placid, back-porch operation... That pattern, like so much in higher education, began to change dramatically... On the heels of all this change comes this splendid volume by Deni Elliot. The new fund-raising environment raises a host of ethical questions that were largely unknown or unrecognized by earlier generations of fund raisers... The great value of this book is that it provides some clear-eyed guidance through the ethical thicket that is modern higher education fund raising. The great charm of the book is that it provides this important service with such eloquence and good taste... Anyone involved in modern fund raising will find something of value in this book." -- G. Calvin MacKenzie, Academe "This volume provides college and university development officers and administrators practical help with recognizing difficult ethical situations and discerning the correct ethical response. It can also serve as a guide for donors who wonder what's reasonable for them to expect from fund raisers." -- Resources in Education Contributors: Allen Buchanan, James A. Donahue, Marilyn Batt Dunn, Deni Elliott, Bernard Gert, Judith M. Gooch, Bruce R. Hopkins, Frank Logan, Mary Lou Siebert, Holly Smith, and Eric B. Wentworth. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Morality in Flux: Medical Ethics Dilemmas in the People's Republic of ChinaRen-Zong Qiu (bio)IntroductionModern China is undergoing a fundamental change from a monolithic society to a rather pluralistic one. It is a long and winding road. Marxism is facing various challenges as the influence of Western culture increases. Confucianism is still deeply entrenched in the Chinese mind but various religions, including Buddhism, Islam, and Christianity are experiencing a revival. (...) Almost fifty minorities coexist in the country in addition to the majority Han people. Tension and conflict are inevitable as diverse—and sometimes incompatible—values come to the fore at this historic juncture. Many fields, including medicine, face new challenges, and in this environment the field of bioethics is flourishing.Like many countries, China is groping with the effects of new medical technology and skyrocketing health care costs. But in the context of the Chinese sociocultural environment, some unique—as well as more familiar—issues arise. None of the classic texts provide ready-made answers to these dilemmas; we must find the answers ourselves. The only reasonable way to resolve the conflicts between opposing values is through dialogue, consultation, and negotiation among the various social and cultural groups.The bioethical dilemmas receiving the most attention in China now relate to the two ends of life: birth and death. On one end are issues relating to reproductive technology, especially birth control and family planning; at the other end is euthanasia.Dilemmas Surrounding Reproductive TechnologyAccording to traditional Chinese belief, not having a child results from not having virtue. In fact, the most serious violation of the Confucian [End Page 16]principle of filial piety is to be without offspring. A Chinese man without a child experiences heavy psychological pressure, and the burden is especially onerous for women because infertility is always blamed on the wife. Wives who do not bear a child are stigmatized and mistreated—even abused—in families that stick to traditional values.In China today, this widely held belief is colliding with another reality: an apparent increase in infertility among newly-married couples. The rate may be about 5 percent. These couples turn to doctors for help.Artificial insemination by donor (AID) and by husband is now widely practiced. Eleven provinces have established sperm banks, and private doctors are performing AID for considerable fees. But procedures to address legal and ethical problems associated with the procedure have lagged behind. With the exception of a few centers in large cities, AID is undertaken without established procedures or policies relating to the selection of donors and recipients, records about those involved, or clarification of the status of the child. The legal status of the child remains unresolved.The status of the child within the community is also unresolved as traditional values clash with the application of modern technology to childbearing. The case of "The Child Who Did Not Belong" (see box), illustrates how an AID child is not accepted by the family that embraces traditional values because he is not the husband's biological child.In vitro fertilization (IVF) is another alternative. Two IVF centers are in operation, one in Beijing and the other in Changsha, and both have succeeded in producing live births. This technology has received considerable media attention and is generally accepted even among those with traditional views.But much of this medical technology is not widely accessible—especially in rural areas—and so some infertile couples resort to surrogate motherhood to ensure an heir. An infertile couple enters into a contract with a woman who has intercourse with the husband in order to bear a child for the couple. This practice is called "borrowing a wife." In some villages, the "borrowed wife" receives as much as 10,000 yuan (five times a professor's monthly salary or about $250) for a girl and double that for a boy.But the more common and thorny problems involved with the beginning of life relate to birth control, family planning, and the "one couple, one child" policy that the Chinese government instituted to curb overpopulation. The goal of that policy is to prevent China's population from exceeding 1.2 billion in the year 2000... (shrink)

In modern hospitals in developed countries, deaths are determined usually after a prearranged schedule of resuscitative efforts. By default, death is diagnosed and determined after “full code” or after the failure of intensive resuscitation. In end-of-life contexts, however, various degrees of less-than-full resuscitation and sometimes no resuscitation are allowed after the consent and shared decision-making of the patient and/or surrogates. The determination of brain death is a unique exception in these contexts because such an end-of-life care plan is usually not (...) offered until after brain death is declared. This essay analyzes and critiques three arguments for denying the family and/or surrogate a chance to consent to or forego the diagnostic protocol of brain death and choose an alternative end-of-life plan. First, opponents of consent for the determination of brain death argue that presenting it as a selectable end-of-life plan undermines the integrity of death determination. The second argument is that it is inconsistent to allow foregoing the determination of brain death when the determination of circulatory death is non-negotiable. The third argument is that allowing the patient/surrogate to forego the determination of brain death would jeopardize the fair and appropriate utilization of intensive care resources and potentially reduce organ donor pools. After closer conceptual examinations of these three arguments, this essay concludes that these arguments are conceptually and morally problematic. It defends an alternative patient-centered end-of-life care plan based on consent and shared decision-making. (shrink)

With the recent advent of facial transplant (FT) treatment, patients who live with facial disfigurement have a new hope of improved facial aesthetics and quality of life. However, FT has been the subject of intense ethical debate, and there are numerous important ethical considerations surrounding FT that require further in-depth exploration. In the present review, the numerous ethical issues surrounding FT are elucidated, especially the weighty psychosocial impacts of FT, issues surrounding patients’ consent, selection and donor matching, and (...) current challenges with postoperative complication management and the facial reconstruction of donors. These are discussed with a key focus on stakeholders’ perspectives including recipients, donors’ families, and the medical teams involved. This review found that a number of key ethical questions remain unanswered in the field of FT, and further consideration is needed for this novel surgical procedure to have the same evidence-based ethical backing as conventional surgical procedures. (shrink)