Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...) knowledge, and capacity, and reducing hazard. (shrink)

The article argues that altruistic giving based on anonymity, which is expected to promote social solidarity and block trade in human body parts, is conceptually defective and practically unproductive. It needs to be replaced by a more adequate notion which responds to the human practices of giving and receiving. The argument starts with identification of the main characteristics of the anonymous altruistic donation: social separation of the organ donor from the recipient, their mutual replaceability, non-obligatoriness of donation, and non-obligatoriness of (...) reciprocation on the recipient’s part. Since these characteristics are also central to typical market relations, anonymous altruistic donation not only cannot promote solidarity but may encourage proposals for markets of transplantable organs. Thus, transplant ethics needs to be reframed. It needs to be rooted in, rather than promote, the practices of giving and receiving known to human societies. As the basis for such reframing, the idea of sharing in another’s misfortune is proposed. It relies on the human practices of giving and receiving and, with appropriate regulatory safeguards, can provide a better conceptual basis for blocking commercial exchanges of human body parts. (shrink)

This article links ethnographic exploration of commodified renal transactions in India to their articulation in Hindi film as practices re-animating kinship in the face of the death or diminishment of the father. To think through the work such organ stories do, I contrast the `transplant film' with the `transfusion film'. I argue transfusion narratives offer a liberal developmentalist recoding of social relations under the sign of a Nehruvian project of national recognition, while transplant narratives abandon the project of development for (...) an imaginated return to tradition. To understand the stakes in this shift, I trace the genealogy of modern transplant medicine through the relationship between recognition and suppression and through the return of the surgical as a metonym for care. (shrink)

In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

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

Blood supplies have become indexes of national security and the public good. While blood shortages can provoke anxiety, controversies continue to erupt in many countries over proper donor screening, especially with reference to HIV. This article sketches these dynamics in several global settings, focusing especially on activist efforts by gay men to reform exclusionary blood donor guidelines. The contours of the debate recall familiar conflicts between the putative demands of public health and the rights of individuals in the era of (...) AIDS. However, if gay activists marshal a discourse of individual rights vis-a-vis forms of institutional exclusion, they also seek a broader shift in social and cultural understandings of gay identity. To capture this complex interplay of citizenship and sociality, risk and responsibility, the article introduces the notion of `vital publics' to refer to the peculiar associational form represented by blood supplies. Vital publics are kinds of embodied association elicited through the generalized exchange of body — in this case, blood. Hailed to `give life' by the jargon of the pervasive social marketing of varied blood service systems, activists seek to contribute to the life of the `vital public' that transfusion medicine calls into being. (shrink)

This paper addresses two research questions. The first is theoretical: What is trust? In the first half of this paper we present a distinctive tripartite analysis. We describe three attitudes, here called reliance, specific trust and general trust, each of which is characterised and illustrated. We argue that these attitudes are related, but not reducible, to one another. We suggest that the current impasse in the analysis of trust is in part due to the fact that some writers allude to (...) these distinctions, but unclearly so, whilst others elide them altogether. The second research question focuses on doctor–patient interaction. Trust is often said to be central in medical encounters but this strikes us as too vague. The success of doctor–patient relations in part depends on adopting the most appropriate of the three attitudes we delineate. We argue that reliance is the appropriate attitude for most medical encounters. When circumstances do require trust, the distinction between specific trust and general trust is crucial. We describe medical encounters requiring specific trust. General trust is less often required in medicine; but it is appropriate in some cases and, when called for, it is called for strongly. (shrink)

ABSTRACT An American surgical team has announced its intention to perform the first human facial transplantation. The team has, however, invited further analysis of the ethical issues before it proceeds and in this paper we take up that challenge in seeking to frame the debate with a particular focus on the recipients of the transplant. We address seven related areas of concern and identify numerous questions that require answers or, perhaps, better answers. We start by examining the nature of the (...) procedure and its intended benefits, why the procedure is being developed, and whether or not this should be viewed as experimental. Having concluded that this is experimental in nature, we then consider the broad question, who is the patient? Here we perceive difficulties in terms of the autonomy of the recipient, the unpredictable effects of receiving the transplant, and the role and influence of society. We conclude by asking whether the question should be ‘whether or not?’ rather than ‘when?’, particularly while the risks of losing face appear to far outweigh the likelihood of gaining face. (shrink)

Since the early 1970s, Marcel Mauss’s Essai sur le Don, translated into English as The Gift in 1954, has been a standard reference in the social science and bioethical literature on the use of human body parts and substances for medical and research purposes. At that time, three social scientists—political scientist Richard Titmuss in the United Kingdom and sociologist Renée C. Fox working with historian Judith Swazey in the United States—had the idea of using this concept to highlight the fundamental (...) structure of the biomedical practices they were studying, respectively, blood donation, and hemodialysis and organ transplantation. The fact that these first applications of Mauss’s essay should emerge in English- rather than in French-speaking countries raises the question of what the translation of the essay, and notably of the word don as gift, may have to do with this fact. Reading Mauss in translation undoubtedly inspired a seminal approach to interpreting medical and research practices based on bodily giving. This article posits that something may have also been lost: a much broader concept of giving with unquestionable links to the Durkheimian concept of solidarity, which Mauss conceptualizes not only as an obligation but also as a liberty to give. (shrink)

BackgroundThe overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. One of the possibilities is the use of personalized medicine, an approach based on quantifiable and scientific factors that determine the global immunological risk of rejection for each patient. Although this approach can improve the efficacy of transplantations, it also poses a number of ethical questions.MethodsThe qualitative research involved 22 semi-structured interviews with nephrologists involved in renal transplantation, with the goal (...) of determining the professionals' views about calculating the global immunological risk and the attendant ethical issues.ResultsThe results demonstrate a general acceptance of this approach amongst the participants in the study. Knowledge of each patient's immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. This approach is not seen as something entirely new, given the fact that medicine is increasingly scientific and evidence-based. Although renal transplantation incorporates scientific data, these physicians believe that there should always be a place for clinical judgment and the physician-patient relationship.ConclusionsThe participants see the benefits of including the calculation of the global immunological risk within transplantation. Such data, being more precise and rigorous, could be of help in their clinical work. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. To act in the best interests of the patient is key to whether the calculation of the global immunological risk is employed. (shrink)

Volume 19, Issue 9, September 2019, Page 44-45.

Living kidney transplantation offers the best results for patients with end-stage renal disease (ESRD). This form of transplantation is no longer restricted to genetically or emotionally related donors, as shown by the acceptance of non-directed living anonymous donors, and the development of exchange programmes (EPs). EPs make it possible to perform living kidney transplantation among incompatible pairs, but while such programmes can help increase living organ donation, they can also create a degree of unfairness. Kidney transplant recipients in the O (...) blood group are at a disadvantage when it comes to EPs because they can only receive organs from O donors, whereas O donors are universal donors. This poses a major challenge in terms of distributive justice and equity. A way to remedy this situation is through altruistic unbalanced paired kidney exchange (AUPKE), in which a compatible pair consisting of an O blood group donor and a non-O recipient is invited to participate in an EP. Although the AUPKE approach appears fairer for O recipients, it still raises ethical questions. How does this type of exchange affect the donor/recipient gift relationship? Should recipients in compatible pairs receive a ‘better organ’ than the one they would otherwise have received from their intended donor? Finally, what is the role of transplant teams in AUPKE? This article will examine the organisational and ethical challenges associated with EPs and AUPKE, and compare different EP policies in countries where such programmes exist. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 20-22, July 2011.

Human tissue and body parts have been used in one way or another for millennia. They have been preserved and displayed, both in museums and public shows. Real human hair is used for wigs, while some artists even use human tissue in their works. Blood, bone marrow, whole organs and a host of other structures and human substances are all transplanted into living persons to treat illness. New life can be created from gametes through in vitro fertilisation , while the (...) creation of cell lines keeps tissue alive indefinitely. These uses create significant challenges for the legal system in the UK. The major challenge for the law is to balance the competing demands of those groups who have vested interests in human tissue—researchers, medical practitioners, patients, families, the community and the police, among many others. It must provide sufficient control to users of tissue, but also take account of the fact that our bodies hold psychological importance for us while we live and, after we die, for those we leave behind. To some degree the law has been successful, but we still lack a comprehensive, coherent approach to the regulation of human tissue. Partially as a reaction to this lack of a comprehensive approach, some commentators have turned to applying the concept of property to human tissue means to achieve regulatory outcomes they support. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 22-23, July 2011.

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)

Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between four frameworks (...) for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations. (shrink)

Today, the frequency and the rate of success resulting from advances in medicine have made organ transplantations an everyday occurrence. Still, organ transplantations and donations modify the subjective experience of human beings as regards the image they have of themselves, of body, of life and of death. If the concern of the quality of life and the survival of the patients is a completely human phenomenon, the fact remains that the possibility of organ transplantation and its justification depend a great (...) deal on the culture in which we live. The exploration of the philosophical tradition allows for a reconsideration of organ transplantation. If we listen to people who have experienced the decline of one of their organs and their own rebirth through the organ of someone else, we arrive at the conclusion that they went through an extreme experience in which nothing appeared as before. All those experiences intensify philosophical questionings on the meaning of life with respect to self fulfilment. The concept of nature as the experience of others can be an authentic source from which to nourish our thoughts about organ transplantation. However, and this is our hypothesis, we need something more if we are to decide something about our own life. We need a hermeneutical stance in relation to ourselves and to our world. Philosophical counselling, as a long established tradition originating with Pythagoras and later reframed by the German philosopher Achenbach could be useful in inspiring a reflection on the good life, chiefly as it takes the form of a Socratic dialogue. (shrink)

In the study of organ and tissue transplantation, the focus tends to be on donation. But where there is “giving,” there is also “getting:” receiving help. Altruism, helping behavior, and the exchange of benefits have received extensive attention from social psychological researchers. The gift exchange described by anthropologist Marcel Mauss provides a framework for reviewing this social psychological research on altruism and exchange and applying it to transplantation. An overall conclusion is that altruistic donation is not so ethically or clinically (...) problematic, while receiving help has a complex psychosocial context that needs to be acknowledged and given more attention. (shrink)