The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in more depth. Ross and Thistlethwaite detail a framework of five principles—respect for persons, beneficence, justice, vulnerability, and responsibility—that positions prospective living donors as patients. The authors engage readers by applying these principles across a series of examples, issues, and possibilities, the “practice.” Readers may (...) wish to reflect further on the framework's implications, including those related to vulnerability, power, and social justice (to name a few), particularly as these relate to the “theory” of this book. The book is well worth the read for clinicians, ethicists, and others involved in organ donation and transplantation. (shrink)

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)

Transplantation of vital organs has been premised ethically and legally on "the dead donor rule" (DDR)—the requirement that donors are determined to be dead before these organs are procured. Nevertheless, scholars have argued cogently that donors of vital organs, including those diagnosed as "brain dead" and those declared dead according to cardiopulmonary criteria, are not in fact dead at the time that vital organs are being procured. In this article, we challenge the normative rationale for the DDR by (...) rejecting the underlying premise that it is necessarily wrong for physicians to cause the death of patients and the claim that abandoning this rule would exploit vulnerable patients. We contend that it is ethical to procure vital organs from living patients sustained on life support prior to treatment withdrawal, provided that there is valid consent for both withdrawing treatment and organ donation. However, the conservatism of medical ethics and practical concerns make it doubtful that the DDR will be abandoned in the near future. This leaves the current practice of organ transplantation based on the "moral fiction" that donors are dead when vital organs are procured. (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)

Living organ donation is developing increasingly into an important therapeutic option in transplantation medicine. In spite of the existence of a normative-legal frame, medico-ethical questions remain open. Among these are in particular 1) who should be taken into consideration as a donor, 2) how information concerning the possibility of living organ donation should be passed on, and 3) what an adequate medical-psychosocial evaluation of potential donors should look like. The paper presents the results of a survey based on questionnaires, (...) which addresses the current practice in German transplantation centers as well as the opinions of clinical practioners regarding these three topics. The empirical data form the context for the formulation of medico-ethical ideas and suggestions concerning living organ donation in Germany. (shrink)

BackgroundEgg donor agencies are increasingly being used as part of IVF in the US, but are essentially unregulated, posing critical ethical and policy questions concerning how providers view and use them, and what the implications might be.MethodsThirty-seven in-depth interviews of approximately 1 h were conducted – with 27 IVF providers and 10 patients.ResultsClinicians vary in their views and interactions concerning egg donor agencies, ranging widely in whether and how often they use agencies. Agencies may offer egg recipients increased choices, but (...) raise ethical and other concerns regarding respect for donors as individuals, potential harms, justice, and donors constituting a vulnerable group. The quality of agencies appears to vary considerably, from acceptable to problematic. Agencies’ medical and psychological screenings of donors can range, and be minimal. Not all agencies adequately track donors’ prior numbers of donations, or share the relevant records with clinics. Clinics may find that potential donors have genetic mutations and medical problems about which they were unaware. Yet agencies and clinics do not provide care for such donors, generating stress. Dissemination of donors’ personal data can potentially threaten confidentiality. Questions emerge of whether increased monitoring/oversight of agencies may be beneficial.ConclusionsThese data, the first to examine providers’ views and interactions regarding egg donor agencies, suggest wide variations in quality and use of agencies, and have critical implications for practice, policy, education and research. Given the potential limitations of the current model of self-regulation of agencies, the present data suggest needs to consider stronger professional guidelines or possible governmental regulations to establish, require and enforce higher standards for agencies to follow, regarding advertising to potential donors and recipients, arranging for appropriate informed consent concerning risks and benefits involved, and for quality control. Appropriate informed consent should be obtained from potential egg donors, including the fact that they may learn about mutations or medical problems about which they were unaware, but for which they will not receive treatment as part of this process. Enhancing understanding among the public-at-large about what egg donation entails may also be helpful. (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)

Kidney transplantation is a lifesaving medical treatment. However, very high demand for kidneys with low kidney donation causes a black market that exploits patients’ desperation and donors’ vulnerability. The current kidney donation programs fail to produce promising results to avoid illegal and unethical kidney trafficking and commercialism. Even though the primary goal of kidney donation is to increase the number of deceased organ donations, in some countries, like Turkey, due to religious or cultural concerns, it is impossible to supply (...) adequate deceased kidney donations. In this view, the aim of this paper is to examine kidney trafficking in the scope of Turkey's current organ donation system and propose a new model, named the Incentivized Kidney Donation Model (IKDM), to increase kidney donation from living donors. The model encompasses the following benefits offered to kidney donors; lifetime health insurance, exemptions from copayments/contribution shares, priority when receiving an organ, priority when finding a job, income tax exemptions for salaried employees, and free or discounted public utilities. This normative model has the potential to promote donors’ altruistic acts as well as the solidarity and loyalty among members of a society without violating ethical values and internationally accepted principles. (shrink)

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

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

In this paper I shall be arguing against the claim made by Erin and Harris and others, that creating a “regulated market” in organs for transplantation taken from living vendors is both viable practically and a moral imperative. No-one can doubt that there is currently a crisis in the provision of organs for transplantation, with a massive gap between supply and demand. There are a number of reasons for this crisis. Since its development as a life-saving measure in the second (...) half of the last century, organ transplantation has expanded exponentially, both in terms of survival rates, the number of people on the waiting list for the procedure, and the range of transplantable organs. Advances in immuno-suppression and in prevention of infection have led to improvement in both the survival of the recipients and of the transplanted organs. At the same time, there has been an increase in repeat transplantations and in multiple organ transplants. The range of conditions for which transplantation is offered has widened, and transplantable organs now include: kidney, liver, pancreas, heart and lung. Brain-dead donors can provide all of these organs, while the kidney and sections of the liver and pancreas can also be obtained from living donors. Survival outcomes are better from living donors than from cadaveric donors, and, in the case of kidney failure, better from transplantation than from dialysis. [End Page 164] The relevant question, however, is whether permitting a market in human organs is morally justifiable, and, even if it were, whether it would provide a solution to the current crisis. I argue in this paper that organ trading is wrong in principle, since it commodifies the human body and inevitably exploits the poor and the socially vulnerable, and that, far from alleviating the crisis, it is likely to make it worse. First we should note that there is an uncompromising opposition to all forms of organ trading from two major international healthcare organisations. (shrink)

The dead donor rule, which requires that organ donors not be killed by the process of organ procurement, is thought to protect vulnerable patients from exploitation and from being harmed through organ procurement. In current practice, the majority of transplantable organs are retrieved from patients who are declared dead by neurological criteria, or "brain-dead." Because brain death is considered to be sufficient for death, it is thought that brain-dead donors are neither harmed nor wronged by organ removal.In (...) this essay I argue that this is not the case. Brain-dead donors can be, and many are, harmed and wronged by... (shrink)

The Philippine government officially responded to the Declaration of Istanbul on Organ Trafficking and the related WHO Guidelines on organ transplantation by prohibiting all transplants to foreigners using Filipino organs. However, local tourists have escaped the regulatory radar, leaving a very wide gap in efforts against human trafficking and transplant tourism. Authorities need to deal with the situation seriously, at a minimum, by issuing clear procedures for verifying declarations of kinship or emotional bonds between donors and recipients. Foreigners who (...) come to the country for transplants with same-nationality donors constitute a problem that is replicated in many transplant centers around the world. Also, emotionally related living donors continue to pose challenges for ethics committees, especially because of the realities associated with the existence of extended families. Those who find themselves facing these issues need to be armed with clear protocols for going through the process of verifying documents and individual declarations assiduously. There is also a need for international referral mechanisms at least to ensure that governments are aware when their citizens travel for transplant so they can take steps they consider suitable to address the vulnerabilities of exploited persons. (shrink)

In the past decade donor commitments to health have increased by 200 percent. Correspondingly, there has been a swell of new players in the global health landscape. The unprecedented, global response to a single disease, HIV/AIDS, has been responsible for a substantial portion of this boon. Numerous health success have followed this windfall of funding and attention, yet the food, fuel, and economic crises of 2008 have shown the vulnerabilities of health and development initiatives focused on short term wins and (...) reliant on a constant flow of foreign funding. For too long, the international community has responded to global health and development challenges with emergency solutions that often reflect the donor's priorities, values, and political leanings, rather than funding durable health systems that can withstand crises. Progress towards achieving the Millennium Development Goals has stalled in many countries. Disease specific initiatives have weakened health systems and limited efforts to improve maternal and child health. As we enter this era of scarce resources, there is a need to return to the foundations of the Alma Ata Declaration signed thirty years ago with the goal of providing universal access to primary healthcare. The global health community must now objectively evaluate how we can most effectively respond to the crises of 2008 and take advantage of this moment of extraordinary attention for global health and translate it into long term, sustainable health improvements for all. (shrink)

This paper examines the vulnerability of boys and young men to trafficking and sexual abuse/exploitation globally as an often-hidden problem. Exploration of the story of Joseph in Genesis and how he was trafficked to Egypt by his brothers and then sexually harassed by Potiphar’s wife will challenge a number of assumptions about vulnerability. The research that has been conducted in Cambodia and the Asia region demonstrates that boys and young men are indeed vulnerable and require our attention. Awareness and (...) response must go beyond stereotypes of what boys should be like to understanding their real context and needs. The paper will emphasize the importance of the Church and Christian faith-based organizations being driven not by donors or current political correctness, but instead focusing on a biblical mandate to work with the most marginalized. Further research is needed to identify exploited populations better, including diverse persons of age, gender, ethnicity disability/ability or sexuality. In addition, the paper will describe the importance of encouraging men in the church towards an authentic biblical masculinity where there is transparency and a deep respect for females and sex. It also promotes the idea of a community where boys and men, in and outside the church, can experience prevention and long-term healing. The restoration of men is needed in relation to buying sex, sexual abuse, pornography and other addictions, which drive the demand for exploitation and trafficking. This includes models of genuine father figures in the church and examples of Christian faith-based organizations that are seeking to challenge men to be better husbands, fathers and brothers. (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)

One effect of late capitalism – the commodification of practically everything – is to knock down the Chinese walls between the natural and productive realms, to use a Marxist framework. Women's labour in egg extraction and ‘surrogate’ motherhood might then be seen as what it is, labour which produces something of value. But this does not necessarily mean that women will benefit from the commodification of practically everything, in either North or South. In the newly developing biotechnologies involving stem cells, (...) the reverse is more likely, particular given the shortage in the North of the egg donors who will be increasingly necessary to therapeutic cloning.Although most of the ethical debate has focused on the status of the embryo, this is to define ethics with no reference to global or gender justice. There has been little or no debate about possible exploitation of women, particularly of ovum donors from the South. Countries of the South without national ethics committees or guidelines may be particularly vulnerable: although there is increasing awareness of the susceptibility of poorer countries to abuses in research ethics, very little has been written about how they might be affected by the enormously profitable new technologies exploiting human tissue. Even in the UK, although the new Medical Research Council guidelines make a good deal of the ‘gift relationship’, what they are actually about is commodification. If donors believe they are demonstrating altruism, but biotechnology firms and researchers use the discourse of commodity and profit, we have not ‘incomplete commodification’ but complete commodification with a plausibly human face. (shrink)

Fecal microbiota transplantation is reportedly the most effective therapy for relapsing Clostridium Difficile infection and a potential therapeutic option for many diseases. It also poses important ethical concerns. This study is an attempt to assess clinicians’ perception and attitudes towards ethical and social challenges raised by fecal microbiota transplantation. A questionnaire was developed which consisted of 20 items: four items covered general aspects, nine were about ethical aspects such as informed consent and privacy issues, four concerned social and regulatory issues, (...) and three were about an FMT bank. This was distributed to participants at the Second China gastroenterology and FMT conference in May 2015. Basic descriptive statistical analyses and simple comparative statistical tests were performed. Nearly three quarters of the 100 respondents were gastro-enterologist physicians. 89% of all respondents believed FMT is a promising treatment modality for some diseases and 88% of whom chose clinical efficacy as the primary reason for recommending FMT. High expectation from patients and pressure on clinicians was reported as the most frequent reasons for not recommending FMT. The clinicians who had less familiarity with FMT reported significantly more worry related to the dignity and psychological impact of FMT compared to those who have high familiarity with FMT.More than half of the respondents were concerned about the commercialization of FMT, although almost one in five respondents did not see this as a problem. We found most respondents have positive attitudes towards FMT but low awareness of published evidence. Informed consent for vulnerable patients, privacy and protection of donors were perceived as the most challenging ethical aspects of FMT. This study identified areas of limited knowledge and ways of addressing ethical issues and indicates the need to devise the education and training for clinicians on FMT. (shrink)

This paper looks at conflicts of interest in the not-for-profit sector. It examines the nature of conflicts of interest and why they are of ethical concern, and then focuses on the way not-for-profit organisations are especially prone to and vulnerable to conflict-of-interest scandals. Conflicts of interest corrode trust; and stakeholder trust (particularly from donors) is the lifeblood of most charities. We focus on some specific challenges faced by charitable organisations providing funding for scientific (usually medical) research, and examine (...) a case study involving such an organisation. One of the principal problems for charities of this kind is that they often distribute their funds within a relatively small research community (defined by the boundaries of a small region, like an American state or Spanish Autonomous region, or a small country), and it often proves difficult to find high-level researchers within the jurisdiction to adjudicate impartially the research grants. We suggest and recommend options appropriate for our case study and for many other organisations in similar situations. (shrink)

BackgroundSocial media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers.Main textThis paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The (...) review highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients’ desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors.ConclusionsPolicymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual’s wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination. (shrink)

Normal 0 false false false MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} This article aims to examine the phenomenon of social services in post-1989 Romania, underscoring the role of the religious factor in the establishment and operation of nongovernmental organisations active in the area of family and child protection/child welfare. The results are based on empirical data collected from interviews with representatives (...) of NGO-s in Iaşi that correspond to the profile of faith-based organisations and which have been included in the list of accredited providers of social services. We used an assessment grid that allowed us to highlight a number of specific characteristics to the Romanian space, found among faith-based organisations involved in the development of social and medical services. One direction that Romanian organisation took was to dilute in time the religious message and to secularise their practices under the influence of the Orthodox majority, as well as following the requirements imposed by secular donors and especially by public ones. The channelling of private resources donated to religious cults predominantly towards building and restoring establishments (churches, monasteries) rather than towards the development of social faith-based programmes aimed at vulnerable populations has caused in faith-based organisations a high level of dependency on secular donors. The process in which the practices and the discourse are secularised is accompanied by a trend towards the fragmentation of the Christian-based civil society. (shrink)

This paper urges reconsideration of analyses of the alternatives to reproductive uterus transplantation (UTx). I focus here specifically on the adoption alternative. Importantly, my purpose is not to oppose UTx provision. Rather, it is to propose ways in which ethical analysis and provision of UTx can potentially accommodate the concerns discussed here. I argue that the adoption alternative to UTx is too readily dismissed, and that this is a dismissal with significant moral costs. I suggest that the radical nature of (...) UTx as a form of assisted reproduction calls for an equivalently radical socio‐moral agenda for reform and transformation of adoption law, policy and practice, as well as of the norms that prevail within our presently strongly bio‐normative reproductive context. In doing so I widen the ethical frame of responsible provision of assisted reproduction to encompass not just obligations towards donors and recipient, but also our broader social responsibilities to ensure that we are doing our best to meet the significant needs of some of the most vulnerable members of our society. (shrink)

Adoption of the Millennium Development Goals triggered much discussion among donor states, multilateral institutions, and developing countries towards changing dysfunctional patterns of interaction that seemed to put the MDGs at risk from their inception. Initially in these high-level discussions, accountability was understood in a state-centric way, primarily as accountability to donors. This needed to be modified with the shift towards developing-country ownership of development strategies and programs. Yet an even greater change was in store when civil society organizations were (...) included in the discussions, since their focus was on accountability to project-affected persons and communities. Hence a new and irreducible conception of accountability came on stage. I characterize this as accountability to the subjects of development and show how it is required and justified by development ethics, based on values of agency and justifiability. This results in a dual standard for accountability: reducing stakeholders’ vulnerability to harmful and inequitable outcomes, and ensuring the justifiability of development projects to affected persons and communities. (shrink)

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

Transplanting organs from emotionally related donors has become a fairly routine procedure in many countries. However, donors have to be chosen carefully in order to avoid not just medically, but also morally, questionable outcomes. This paper draws attention to vulnerabilities that may affect the voluntariness of the donor's decision. Suggestions are made as to how to approach the evaluation and selection of potential donors.

A recent organ distribution scandal in Germany raises questions of general importance on which many thousands of lives may well depend. The scandal in Germany has produced reactions that are likely to occur whenever and wherever distribution irregularities occur and become public knowledge. After it had become known that physicians in three German hospitals were in the habit of manipulating records in order to fast-track their patients’ cases, the country experienced a decrease of available organs by a staggering 40% in (...) October 2012. Even though this loss of trust by donors and their families is understandable, and potentially a legitimate form of protest against wrongful distribution, the withdrawal of agreement to serve as a posthumous donor in response to irregularities also inevitably results in avoidable poor outcomes for highly vulnerable individuals. In this paper, we provide a moral analysis of such dilemmas and make recommendations as to the way forward. (shrink)

Plasma protein therapies are a group of essential medicines extracted from human plasma through processes of industrial scale fractionation. They are used primarily to treat a number of rare, chronic disorders ensuing from inherited or acquired deficiencies of a number of physiologically essential proteins. These disorders include hemophilia A and B, different immunodeficiencies and alpha 1-antitrypsin deficiency. In addition, acute blood loss, burns and sepsis are treated by PPTs. Hence, a population of vulnerable and very sick individuals is dependent (...) on these products. In addition, the continued well-being of large sections of the community, including pregnant women and their children, travelers and workers exposed to infectious risk is also subject to the availability of these therapies. Their manufacture to adequate amounts requires large volumes of human plasma as the starting material of a complex purification process. Mainstream blood transfusion services run primarily by the not-for-profit sector have attempted to provide this plasma through the separation of blood donations, but have failed to provide sufficient amounts to meet the clinical demand. The collection of plasma from donors willing to commit to the process of plasmapheresis, which is not only time consuming but requires a long term, continuing commitment, generates much higher amounts of plasma and has been an activity historically separate from the blood transfusion sector and run by commercial companies. These companies now supply two-thirds of the growing global need for these therapies, while the mainstream government-run blood sector continues to supply a shrinking proportion. The private sector plasmapheresis activity which provides the bulk of treatment products has been compensating the donors in order to recognize the time and effort required. Recent activities have reignited the debate regarding the ethical and medical aspects of such compensation. In this work, we review the landscape; assess the contributions made by the compensated and non-compensated sectors and synthesize the outcomes on the relevant patient communities of perturbing the current paradigm of compensated plasma donation. We conclude that the current era of “Patient Centeredness” in health care demands the continuation and extension of paid plasma donation. (shrink)

The Western focus on personal autonomy as the normative basis for securing persons’ consent to their treatment renders this autonomy-based approach to informed consent vulnerable to the charge that it is based on an overly atomistic understanding of the person. This leads to a puzzle: how does this generally-accepted atomistic understanding of the person fits with the emphasis on familial consent that occurs when family members are provided with the opportunity to veto a prospective donor’s wish to donate after (...) she has died and her organs are being considered for harvesting? It is argued in this paper that this charge can be met and this puzzle dissolved once it is recognized that autonomy is an inherently social concept. (shrink)

During the past two decades, opportunities for women's social movement organizations to expand their scope of engagement have often been accompanied by greater vulnerability to donor discipline and scrutiny. Efforts by activists to accommodate the demands for accountability and institutional sustainability by professionalizing their organizations have been instrumental in moving feminist concerns into the political mainstream. However, such institutionalization has frequently contributed to the persistence or creation of social hierarchies within and between women's organizations, as well as to shifts in (...) their social change agendas and action strategies. This article examines the common dilemmas of activists in Latin America and the United States, bringing together two usually separate domains of scholarship to analyze the course, costs, and possibilities of organizational transformation. (shrink)

The prohibition of commercialisation of the human body and its parts is not applied consistently and suffers from many exceptions in the human biological material (HBM) market. Examples include the possibility of patenting certain HBM-derived products and their commercial marketing or payments for blood donations. Thus, the current practice of marketing HBM-derived products makes the altruistic donor most vulnerable to exploitation while being deprived of benefits. There seem to be two ways to improve this state of affairs. The first (...) is to apply consistently the prohibition of commercialisation of the body and its parts to commercially marketed tissue and cell products as well. This would require limiting the possibility of financial gain associated with the processing, distribution and sale of HBM-based products. Such a solution, however, does not seem to gain wide acceptance or have a chance of implementation in the near future. Therefore, introducing more transparent rules and greater donor empowerment seems more reasonable by exempting HBM from the ban on commercialisation under certain conditions and with clear limitations. (shrink)

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

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. (...) Guidelines are proposed that prohibit the retrieval of kidneys from young children and the mentally retarded but permit one exception. They would allow retrieval of a kidney when the consequence to a first order relative with whom the donor has a meaningful and valuable relationship is otherwise imminent death. This would be done in accordance with additional guidelines that minimize harm to the donor. Since most patients with end stage renal disease can be maintained on dialysis the need for a kidney to prevent death should be an uncommon occurrence. This compromise is proposed as a solution to a dilemma that exists because two ethical principles are in conflict and one cannot be honored without violating the other. (shrink)

The notion that Western ways are superior can be used to justify subsidising advocacy to the poor in Africa who might otherwise reject those ways out of ignorance. This ignores differences in culture that can trip up Western logic in Africa. When generosity is the reason to subsidise Western interventions, outside agents can be paid back in honour in ways not appropriate for Christians to accept. Perceived global inequalities used to convince donors to part with their money are impositions (...) when those inequalities are not realised by recipients. When something inherently good, like the gospel, is routinely subsidised, some African people only value it when it comes with money. This disenfranchises poor evangelists. In order to overcome missionary ignorance, promotion of the prosperity gospel, and corruption associated with excessive foreign subsidies, this article advocates that vulnerable mission, namely, foreign intervention using local languages and resources, be permitted. (shrink)

Enactment of mandated pre-procedure disclosures in abortion and assisted reproductive technology services has swelled in recent years. Calls to equally regard these mandates as neutral tools in furtherance of patient protection fail to acknowledge key substantive and structural differences in these reproduction-affecting mandates. While ART mandates permit physicians to use their medical judgment to protect presumptively vulnerable egg donors and gestational carriers, abortion disclosures impart scientifically suspect messaging aimed at dissuading women from pursuing pregnancy termination. These and other (...) distinctions counsel in favor of regarding and analyzing abortion and ART mandated disclosures as separate and distinguishable informed consent tools. (shrink)

Biobanking of patient-derived materials is routine in health care, research, and public health emergencies. Ethical guidelines for biobanking address concerns including some about genetic materials, informed consent, confidentiality, regulatory environments, and standards of governance. This chapter identifies some limitations of existing guidelines that were apparent to one author during an Ebola outbreak, and specifies five ethical concerns about biobanking that warrant additional attention: misconceptions about biobanking, unknown consequences for donors, socioeconomic inequities that compound vulnerabilities, lasting and proportional benefits in (...) North-South research, and contextual challenges to disclosure and understanding. These affect patients, donors, health systems, research, and policy, and are amplified during public health emergencies. (shrink)

Whilst India has been debating how to regulate 'surrogacy' the UK has undergone a major consultation on increasing the amount of 'expenses'paid to egg 'donors', while France has recently finished debating its entire package of bioethics regulation and the role of its Biomedicine Agency. Although it is often claimed that there is no alternative to the neo-liberal, market-based approach in regulating (or not) reproductive medicine--the ideology prevalent in both India and the UK--advocates of that position ignore the alternative model (...) offered by France's tighter regulation, as well as its overarching concern with protecting the vulnerable and ensuring social justice. Whilst the concepts underpinning the French model of regulation also have their provenance in Western political philosophy and not in the developed world, they embody a very different attitude and suggest that there is indeed an alternative to letting the market decide. However, even in France that alternative is highly contested. (shrink)

ABSTRACT In 1975 John Harris envisaged a survival lottery to redistribute organs from one to a greater number in order to reduce number of deaths as a consequence of organ failure. In this paper I reach a conclusion about when running a survival lottery is permissible by looking at the reason prospective participants have for allowing the procedure from a contractual perspective. I identify three versions of the survival lottery. In a National Lottery, everyone within a jurisdiction is a candidate (...) for being a donor for everyone else, disregarding all differences between individuals' eventual possibility of needing an organ. In a Group Specific Lottery, it is a question of running a lottery among members of a specific group who share the same probability of getting organ failure. In a Local Lottery one randomises among individuals who are already in need of a new organ but who happen to be compatible and in need of different organs. While the first is vulnerable to considerations of fairness, it is difficult to perceive a feasible way to implement the second option that does not come with a host of unwelcome consequences. I argue, however, that it is permissible to run Local Lotteries. (shrink)

ABSTRACT Although considerable attention has been given to ethical issues related to clinical research in developing countries, in particular related to HIV therapy, there has been limited focus on health systems research, despite its increasing importance in the light of current trends in development assistance. This paper examines ethical issues related to health systems research in ‘post’‐conflict situations, addressing both generic issues for developing countries and those issues specific to ‘post’‐conflict societies, citing examples from the author’s Cambodian experience. It argues (...) that the destruction of health infrastructure results in a loss of structures and processes that would otherwise protect prospective research subjects who are part of vulnerable populations. It identifies the growth of health systems research as part of a trend towards sectoral and programmatic development assistance, the emergence of ‘knowledge generation’ as a form of research linked to development, and the potential for conflict where multilateral and bilateral donors are both primary funders and users of health systems research. It also examines the position of the health system researcher in relation to the sponsors of this research, and the health system being analysed. (shrink)

Given narrow operating margins, health care organizations are increasingly relying on philanthropy to fund operations. Since individuals provide the majority of philanthropic support, many organizations have expanded their “grateful patient fundraising” programs to include current inpatients, both established donors as well as persons of wealth. While this is legally permissible under HIPAA, it raises substantial ethical concerns for potential coercion of vulnerable patients, as well as unequal care stemming from preferential treatment and provided “amenities.” While some have drawn (...) the analogy to the additional comforts provided to first-class airline passengers, this analogy is flawed because of the potential clinical impact of the opportunities and services provided, especially to merely potential donors. From an ethical perspective, such programs should only provide non-clinical amenities to established donors, and at the same time strive for maximal transparency whereby all patients are assured of equal care and are fully informed of the specific benefits associated with any potential donation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation by Daniel GrollMelissa MoschellaGROLL, Daniel. Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation. New York: Oxford University Press, 2021. 256 pp. Cloth, $74.00In Conceiving People, Daniel Groll argues that, generally speaking, those intending to conceive with the help of donor gametes have a moral obligation to use an open donor rather than (...) an anonymous one. This obligation is grounded on the likelihood that their children will have a significant future interest in acquiring genetic knowledge, defined as "knowledge of who one's genetic progenitors are." Groll labels this view the significant interest view, which he argues for largely on empirical grounds.Before beginning his defense of the significant interest view, Groll dedicates chapter 2 to arguing that parents who conceive with the help of donor gametes should not keep this a secret from their children. His position on this point reflects the current consensus on the subject, but he offers a novel argument for it, based on the claim that keeping "the secret" in itself harms the parent–child relationship by inherently compromising the intimacy proper to that relationship.Chapter 3 presents the significant interest view in greater detail, distinguishing it from two other approaches: (1) the "Profound Prudential Good view," taken from the work of David Velleman, according to which "genetic knowledge is a profound prudential good and people who lack it will have tremendous trouble figuring out who they are," and (2) the view that "people have a right to genetic knowledge." Unlike these competing approaches, Groll's view "does not directly depend on claims about the value of genetic knowledge" but is based primarily on the fact that "many donor-conceived people are subjectively interested in having genetic knowledge," combined with the claim that parents have an obligation to promote their children's well-being by satisfying their worthwhile significant subjective interests. Because Groll's argument depends on the worth and significance of genetic knowledge, it is vulnerable to what he calls the "sideshow objection"—that is, that the significant interest view is just a sideshow, and the worth of genetic knowledge is what actually does the important normative work. At the same time, Groll's view that the interest in genetic knowledge is worthwhile and significant also leaves him open to the "bionormativity objection," according to which the interest in genetic knowledge "is morally problematic in virtue of evincing and entrenching a kind of bionormative prejudice" that sees the biological family as a normative ideal. [End Page 141]Responding to these two objections is the task of chapters 4 and 5. Chapter 4 argues that genetic knowledge is an objective but "prudentially optional good," meaning that "its value is not fungible, but a life that lacks it is not thereby impoverished." This distinguishes Groll's view from the profound prudential good view, which he characterizes as a form of "genetic chauvinism." Groll argues that genetic knowledge is valuable because it can provide insight into personal identity by answering questions about how I came to be and who I am like, but that the genetic knowledge is not the only or best way to answer these questions (thus explaining why it is optional, and why the significant interest view is not just a sideshow).Chapter 5 addresses the "bionormativity objection," which includes both "heteronormativity" (privileging families headed by a mother and father) and "biogenetic normativity" (privileging genetically related families). Groll ultimately responds to this objection by arguing that, even if (as Groll believes) our current society overemphasizes the importance of genetic relationships, "the interest in genetic knowledge is rationally intelligible quite apart from the bionormative social milieu that surrounds it."Chapters 6 through 8 present the implications of the preceding argument. Chapter 6 argues that the reasons to use an open donor are generally conclusive, because most reasons parents might have to use an anonymous donor do not outweigh the child's significant interest in obtaining genetic knowledge. Chapter 7 considers the responsibilities of gamete donors, arguing that gamete donation is not morally objectionable because it is permissible for donors to transfer prospective parenthood responsibilities... (shrink)

BackgroundThe global expansion of biobanks has led to a range of bioethical concerns related to consent, privacy, control, ownership, and disclosure. As an opportunity to engage broader audiences on these concerns, bioethicists have welcomed the commercial success of Rebecca Skloot’s 2010 bestselling book The Immortal Life of Henrietta Lacks. To assess the impact of the book on discussion within the media and popular culture more generally, we systematically analyzed the ethics-related themes emphasized in reviews and articles about the book, and (...) in interviews and profiles of Skloot.MethodsWe conducted a content analysis of a population of relevant English-language articles and transcripts (n = 125) produced by news organizations and publications in the U.S., Canada, Great Britain/Ireland, and Australia/New Zealand. We scored each article for the emphasis and appearance of 9 ethics-related themes. These were informed consent, welfare of the vulnerable, compensation, scientific progress, control/access, accountability/oversight, privacy, public education, and advocacy.ResultsThe informed consent theme dominated media discussion, with almost 39.2 percent of articles/transcripts featuring the theme as a major focus and 44.8 percent emphasizing the theme as a minor focus. Other prominent themes and frames of reference focused on the welfare of the vulnerable (18.4 percent major emphasis; 36.0 percent minor emphasis), and donor compensation (19.2 percent major; 52.8 percent minor). Ethical themes that comprised a second tier of prominence included those of scientific progress, control/access, and accountability/oversight. The least prominent themes were privacy, public education, and advocacy.ConclusionsThe book has been praised as an opportunity to elevate media discussion of bioethics, but such claims should be re-considered. The relatively narrow focus on informed consent in the media discussion generated by Skloot’s book may limit the ability of ethicists and advocates to elevate attention to donor control, compensation, patenting, privacy, and other ethical issues. Still, ethicists should view the book and a pending major TV film translation as opportunities to highlight through media outreach, consultation exercises and public forums a broader range of bioethical concerns that would otherwise be under-emphasized in news coverage. Such efforts, however, need to be carefully planned and evaluated. (shrink)

In this chapter, I examine the concept of vulnerability as a complex constitutive feature of human agency and argue that it is both a constraint on and a resource for practical reasoning. When discussed as an ontological feature of human agency, vulnerability is primarily understood as an aspect of embodiment, which is problematic in different respects. First, in relation to the situatedness of human agency, vulnerability indicates that human agents are subjected to contextual contingencies. Second, in relation to temporality, vulnerability (...) indicates that agents act in time and under the pressure of time. They are finite and produce finite and perishable actions, even though the longlasting effects of an action may survive the action itself. Third, in relation to corporal feature of agency, vulnerability is associated to suffering and frailty, insofar as bodily needs and desires represent both springs of and hindrances to rational action. Finally, in relation to the social nature of human animals, vulnerability indicates the susceptibility to be harmed, obstructed, undercut or manipulated by other agents These varieties of vulnerability are constituive features of human agency, which cannot be removed without removing what is peculiar and specific to human agency. Theories of practical reason are primarily concerned with constitutive vulnerability as a defect, and presume to offer normative guidance by adopting an idealized account of rational agency, which corrects or merely cancels the defective features of human agency. By contrast, theories of bounded rationality understand practical reasoning instrumentally, and thus are concerned with cognitive limitations of practical rationality, in particular with partial and perspectival information. However, the notion of “partial information” is inadequate to capture the complexities and significance of vulnerability, even in its restricted cognitive sense, which has to do with the agent’s situatedness. On the view I propose, instead, vulnerability is declined as a constitutive constraint on practical reasoning. Susceptibility to time constraints makes sense of the agents’ engagement in action and of their distinctive deliberative perspective. Susceptibility to bodily needs and desires tracks the normative relation between motivations and reasons for action, as well as the corporal roots of the agents’ efficacy in a perceived context. Susceptibility to others makes possible to broaden the scope and the modes of individual agency, by way of inter-action and shared agency. Rather than the source of problems and issues for rational agency, I take vulnerability to name the cluster of constitutive constraints that shape practical reasoning. According to the distinctive variety of Kantian constructivism I defend, practical reason is incomplete, rather than imperfect or defective. The completion of practical reason does not aim to correct or dissolve vulnerability, but deploys vulnerability as a resource to build up autonomy. This view accounts for autonomy as a normative relation among vulnerable agents, which develops in time. (shrink)

Introduction -- Entering the world of medicine: contexts -- Why bioethics needs a philosophy (and theology) of medicien -- Perspectives on philosophy of medicine -- Perspectives on theology of medicine -- Finding the target: Messer's theology of health -- A philosophical-theological framework for medicine -- Human vulnerability and the goods of medicine -- Re-engaging the world of medicine: applying philosophy and theology of medicine.

The “Dead Donor Rule” (DDR) is an important injunction shaping the field of organ retrieval and scholarly assessments of specific retrieval practices’ permissibility (e.g., Pasquerella, Smith, and...

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this (...) paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives. (shrink)

We are living in a time of acute vulnerability. From climate change to drone warfare, terrorist attacks to mass shootings, safe spaces to trigger warnings, not to mention the COVID-19 pandemic, homo vulnerabilis is once again coming to terms with the fact that it can be wounded, or even killed. Against such finitude, sovereignty is now reasserting itself as a political power that might save us from our ontological state. The irony is, of course, that such sovereignty – for example (...) through camps, walls, police violence, or drones – is also the underlying, historical cause of many of our most intense contemporary experiences of vulnerabilization. Interrupting the dialectic by which sovereignty manages to be both the cause of our vulnerabilization and the phantasmatic tool of its prevention, in Being Vulnerable Arne De Boever explores how today’s experiences of vulnerabilization can be translated into a collective human power that dismantles the form of sovereignty that is producing this state of affairs. Focused on theories, paradigms, and alternative formations of sovereignty, Being Vulnerable reconsiders the tradition of thinking through a political concept in order to approach it anew. (shrink)

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 paper aims to understand the relationship between ignorance and vulnerability by drawing on recent work on the epistemology of ignorance. After elaborating how we might understand the importance of human vulnerability, I develop the claim that ignorance of vulnerability is produced through the pursuit of an ideal of invulnerability that involves both ethical and epistemological closure. The ignorance of vulnerability that is a prerequisite for such invulnerability is, I contend, a pervasive form of ignorance that underlies and grounds other (...) oppressive forms of ignorance. Thus, undoing such forms of ignorance requires working toward a particular form of vulnerability: epistemic vulnerability. (shrink)