ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und können sich nicht zu komplett autonomen Wesen entwickeln, aber aus ihrer eigenen Perspektive sind sie im (...) dystopischen System immer noch „privilegiert“. Wir argumentieren, dass dieser Film auf symbolische Weise diejenigen Individuen fokussiert, die vom medizinischen Fortschritt nicht profitieren oder die nicht genügend Handlungsspielraum haben, um sich gegen geltende Praxen zu positionieren. Filme wie Never Let Me Go können deshalb ein Beitrag sein, um die Perspektive marginalisierter Personen im medizinischen System einzunehmen. (shrink)

BackgroundPregnant people have been overlooked or excluded from clinical research, resulting in a lack of scientific knowledge on medication safety and efficacy during pregnancy. Thus far, both the opportunities to generate evidence-based knowledge beyond clinical trials and the role of pregnant people in changing their status quo have not been discussed. Some scholars have argued that for rare disease patients, for whom, just like pregnant people, a poor evidence base exists regarding treatments, solidarity has played an important role in addressing (...) the evidence gap. This paper explores whether and how the enactment of solidarity among pregnant people can be stimulated to help address the poor evidence base on medications used during pregnancy.MethodWe use the concept of solidarity formulated by Prainsack and Buyx and enrich their concept by providing an account for stimulating the enactment of solidarity. Then we apply this account to the case of pregnant people who use medication.ResultsSolidarity means enacted commitment on the part of an individual to assisting others with whom the person recognizes a similarity in a relevant respect. Although solidarity cannot be imposed, we argue that the empowerment of people is a crucial concept in understanding how solidarity can be stimulated. Empowerment in the context of pregnant people means creating awareness about their status quo, explaining how scientific research can help close the knowledge gap, and how pregnant people can themselves contribute. In particular, how pregnant people can contribute to the collection of health data to strengthen the evidence base for medications used during pregnancy.ConclusionsWe conclude that acting in solidarity can help change the status quo for pregnant people. Furthermore, we argue that the empowerment of pregnant people and other relevant stakeholders is a way to stimulate the enactment of solidarity. The process of empowerment starts by raising awareness about the lack of evidence on medications used during prengnacy and by explaining to pregnant people how they can contribute to changing the way knowledge is being generated by, for example, sharing data on the health effects of medications. (shrink)

It has traditionally been assumed that organ donation must be altruistic, though the necessity of altruistic motivations has recently been questioned. Few, however, have questioned whether altruism is always a good motive. This paper considers the possibility that excessive altruism, or self-abnegation, may be intrinsically bad. How this may be so is illustrated with reference to Tom Hurka’s account of the value of attitudes, which suggests that disproportionate love of one’s own good—either excessive or deficient—is intrinsically bad. Whether or not (...) we accept the details of this account, recognising that altruistic motivations may be intrinsically bad has important implications for organ procurement. One possible response is to say that we should take further measures to ensure that donors have good motives—that they are altruistic is no longer enough. An alternative is to say that, since altruistic donation need not be intrinsically good, we have less reason to object to other motivations. (shrink)

This paper explores problems associated with using altruism as the central value in gamete donation, and in doing so draws on empirical data that sheds light on why gamete donors choose to donate. Donation of bodily material is, arguably, supposed to be motivated by altruism, and this is the view taken by many European governments. Other values are often ignored or rejected as morally inappropriate. This paper analyses some conceptual and practical problems with the use of altruism as the motivation (...) to determine moral acceptability—drawing on empirical data that suggests gamete donors are not motivated purely by altruism, and that motivations are in fact quite complex. Two problems are first analysed: how do we distinguish altruistic from non-altruistic donations and how do we distinguish between removing barriers and providing incentives. A final question, triggered by the Nuffield Council on Bioethics’ report, is whether the meaning of the payment should be decided on the basis of an a priori definition or on the basis of the donors’ subjective experience. It is concluded that there are different legitimate core values in donation, which should be balanced. In order to value the good generated by donation, donors with mixed motives should be accepted, as long as helping others is an important motive and also features in their motivation. (shrink)

In this article we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so-called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: institutionally organized campaigns based on historical cases aimed at (...) promoting non-directed altruistic donation; personal case-based campaigns organized by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; institutionally organized personal case-based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two. (shrink)

This paper looks at the ethics of opt-in vs. opt-out of organ donation as Scotland has transitioned its systems to promote greater organ availability. We first analyse studies that compare the donation rates in other regions due to such a system switch and find that organ increase is inconclusive and modest at best. This is due to a lack of explicit opt-out choices resulting in greater resistance and family override unless there are infrastructures and greater awareness to support such change. (...) The paper then looks at the difference between informed consent of the opt-in vs. presumed consent in the opt-out approaches. Patient autonomy and dignity are better reflected with informed consent. Eighteen months have passed since the new organ donation policy has come into effect, this paper recommends more research into organ donors’ psychological motivations to help governments and the healthcare profession obtain more organs for transplantation. (shrink)

In The Gift Relationship, Richard Titmuss argued that the practice of altruistic blood donation fosters social solidarity while markets in blood erode it. This paper considers the implications of this line of argument for the organ market debate. I defend Titmuss’ arguments against a number of criticisms and respond to claims that Titmuss’ work is not relevant to the context of live donor organ transplantation. I conclude that Titmuss’ arguments are more resilient than many advocates of organ markets suggest, and (...) more relevant to the debate than is commonly appreciated. (shrink)

There is an ongoing expert debate with regard to financial incentives in order to increase organ supply. However, there is a lacuna of empirical studies on whether citizens would actually support financial incentives for organ donation.

ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und können sich nicht zu komplett autonomen Wesen entwickeln, aber aus ihrer eigenen Perspektive sind sie im (...) dystopischen System immer noch „privilegiert“. Wir argumentieren, dass dieser Film auf symbolische Weise diejenigen Individuen fokussiert, die vom medizinischen Fortschritt nicht profitieren oder die nicht genügend Handlungsspielraum haben, um sich gegen geltende Praxen zu positionieren. Filme wie Never Let Me Go können deshalb ein Beitrag sein, um die Perspektive marginalisierter Personen im medizinischen System einzunehmen. (shrink)

In the film Never Let Me Go, clones are forced to donate their organs anonymously. As a work of fiction, this film can be regarded as a negotiation of limited agency, since the clones are depicted as vulnerable individuals. Thereby, it evokes a confrontation with underprivileged positions in technocratic societies, encouraging the audience to take the perspective of the marginalised. The clones are situated in ‘privileged deprivation’; from the audience’s point of view, they are unable to evolve into autonomous agents—but (...) from their own perspective within the dystopian system, they are still ‘privileged’. In this paper, we analyse the depiction of the clones’ personal development. Further, we examine references to bioethical aspects as well as technologies that affect the human body both on a micro and macro level—cloning and its impact on the human embryo and organ donation practised on the full-grown human body. We argue that this film as a reference for the discussion in popular culture focuses on individuals who do not profit from modern technical progress or do not have enough agency to refuse it. To make this point, we analyse the film’s fictional story, set in a form of alternate history, as a negotiation of a historical context which brings out the idea of neglected voices. (shrink)

Janet Malek (91–102, 2019) argues that a “clinical ethics consultant’s religious worldview has no place in developing ethical recommendations or communicating about them with patients, surrogates, and clinicians.” She offers five types of arguments in support of this thesis: arguments from consensus, clarity, availability, consistency, and autonomy. This essay shows that there are serious problems for each of Malek’s arguments. None of them is sufficient to motivate her thesis. Thus, if it is true that the religious worldview of clinical ethics (...) consultants should play no role whatsoever in their work as consultants, this claim will need to be defended on some other ground. (shrink)

This essay comments on the British Medical Association's recent suggestion that protocols for Elective Ventilation (EV) might be revived in order to increase the number of viable organs available for transplant. I suggest that the proposed revival results, at least in part, from developments in the contemporary political landscape, notably the decreasing likelihood of an opt-out system for the UK's Organ Donor Register. I go on to suggest that EV is unavoidably situated within complex debates surrounding the epistemology and ontology (...) of death. Such questions cannot be settled a priori by medical science, bioethics or philosophical reflection. As Radcliffe-Richards suggests, the determination of death has become a moral question, and therefore, now extends into the political arena. I argue for the conclusion that EV, and wider debates about organ donation and the constitution of the organ donation register, are matters of ‘biocitizenship’ and must, therefore, be addressed as ‘biopolitical’ questions. (shrink)

Figuring out what pushes individuals to become organ donors has become the holy grail of social scientists interested in transplantations. In this paper I concentrate on solidarity as a determinant of organ donation and examine it through the history of organ donation in Israel. By following the history of transplantation policies since 1968 and examining them in relation to different types of solidarities, this paper leads to a nuanced understanding of the ties between solidarity and health policy. Attempts to foster (...) an all-encompassing consensus on the definition of brain death yielded the Transplantation and the Brain-Respiratory Death Laws of 2008. It was hoped that a wide “civic solidarity” would render Israel self-sufficient in its organ economy. However, the failure of the law led to the breakdown of civic solidarity in organ donation. As a result, initiatives such as the priority policy and non-directed living organ donations, developed out of a narrower conception of solidarity. Juxtaposing these initiatives sheds light on macro level processes for policy makers and suggests solidarity as a key bioethical concept to understand organ donation policies. (shrink)

BackgroundThe bioethical debates concerning living donation and surrogacy revolve around similar ethical questions and moral concepts. Nevertheless, the ethical discourses in both fields grew largely isolated from each other.MethodsBased on a review of ethical, sociological and anthropological research this paper aims to link the ethical discourses on living kidney donation and surrogacy by providing a comparative analysis of the two practices’ relational dimension with regard to three aspects, i.e. the normative role of relational dynamics, social norms and gender roles, and (...) reciprocity. Based on this analysis, we derive conclusions for the framing of living organ donation and surrogacy in ethical theory and practice.ResultsFirst, our analysis emphasizes the relevance of acknowledging the complex relational implications of living kidney donation and surrogacy. Underestimating this relational dimension may not only lead to individual crises but endanger existing as well as newly emerging familial relationships. Second, we point out differences in the normative assessment of social norms and gender roles in the ethical debates about living kidney donation and surrogacy. In particular, we show how different evaluations of altruism affect the understanding of autonomy in both contexts. In addition, we sensitize for biased perceptions of gender roles. Finally, we argue that challenges resulting from unresolved reciprocity are an issue in living kidney donation and surrogacy independent of whether the exchange of body parts or bodily services is framed as a gift or commercial exchange. By pointing out the limits of financial compensation, we stress the relevance of non-material, relational rewards as potential remedy. (shrink)

Should priority in the allocation of organs be given to those who have previously donated or declared their willingness to do so? This article examines the Israeli priority rule in light of two prominent critiques of priority rules, pertaining to failure to reciprocate and unfairness. The scope and content of these critiques are interpreted from the perspective of equality of opportunity. Because the Israeli priority rule may be reasonably criticized for unfairness and failing to reward certain behaviors, the article develops (...) an adjusted priority rule, which removes and adjust the elements in the Israeli priority rule deemed problematic. However, such a priority rule is complex to the extent that it may fail to increase donation rates and furthermore introduce new concerns of fairness, as the better off may be better able to navigate the complex adjusted priority rule. (shrink)

Drawing on empirical evidence in medicine, economics, law, and anthropology, I argue that a market is uniquely capable of meeting the demand for transplantable kidneys, and that it may be arranged so as to operate safely. The welfare gains, expected to accrue to both vendors and recipients, are sufficient to justify sales. Having spelled out the considerations recommending a kidney market, I address the most forceful objections facing the proposal. Despite its currency, the claim that incentives will crowd out altruistic (...) donors and result in a decrease in supply is empirically unsupported and predicated on an implausible view of donorsâ motives. A host of objections claim vendorsâ will not give informed consent. Many such objections identify easily remediable problems, or impose unreasonable standards â standards that would rule out morally permissible kidney donation. And all presuppose a model of morally transformative consent that, I argue, is deficient. Two further challenges point to harms inflicted on those who do not participate in the market. Some claim that those in poverty will be subject to harmful social and legal pressure to vend. This objection fails to distinguish between being pressured to perform a specific act, and being under general economic pressure and having the option to perform an act. It, moreover, presupposes vending more common than is possible. Others worry that the market will give rise to unfair pecuniary externalities. This objection also presupposes that kidney sales will occur more often than is possible. But more importantly, the normative consideration that is supposed to make such externalities especially objectionable, in fact, recommends allowing sales. I also make a political case for kidney sales. I offer an account of the stateâs proper role in the market. I begin with a conception of democratic equality according to which the state is responsible to secure for its citizens the preconditions for democratic participation. I then show that this end would be promoted were the state to end the current prohibition on sales. (shrink)