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)

This paper asks whether investigation into the ontology of the extended family can help us to think about and resolve questions concerning the nature of the family’s decision-making authority where organ donation is concerned. Here, “extended family” refers not to the multigenerational family all living at the same time, but to the family extended past its living boundaries to include the dead and the not yet living. How do non-existent members of the family figure into its ontology? Does an answer (...) to this question help to resolve questions about the distribution of authority within the extended family? (shrink)

Organ transplantation from living related donors in Bangladesh first began in October 1982, and became commonplace in 1988. Cornea transplantation from posthumous donors began in 1984 and living related liver and bone marrow donor transplantation began in 2010 and 2014 respectively. The Human Organ Transplantation Act officially came into effect in Bangladesh on 13th April 1999, allowing organ donation from both brain-dead and related living donors for transplantation. Before the legislation, religious leaders issued fatwa, or religious rulings, in favor of (...) organ transplantation. The Act was amended by the Parliament on 8th January, 2018 with the changes coming into effect shortly afterwards on 28th January. However, aside from a few posthumous corneal donations, transplantation of vital organs, such as the kidney, liver, heart, pancreas, and other body parts or organs from deceased donors, has remained absent in Bangladesh. The major question addressed in this article is why the transplantation of vital organs from deceased donors is absent in Bangladesh. In addition to the collection of secondary documents, interviews were conducted with senior transplant physicians, patients and their relatives, and the public, to learn about posthumous organ donation for transplantation. Interviews were also conducted with a medical student and two grief counselors to understand the process of counseling the families and obtaining consent to obtain posthumous cornea donations from brain-dead patients. An interview was conducted with a professional anatomist to understand the processes behind body donation for the purposes of medical study and research. Their narrative reveals that transplant physicians may be reticent to declare brain death as the stipulations of the 1999 act were unclear and vague. This study finds that Bangladeshis have strong family ties and experience anxiety around permitting separating body parts of dead relatives for organ donation for transplantation, or donating the dead body for medical study and research purposes. Posthumous organ donation for transplantation is commonly viewed as a wrong deed from a religious point of view. Religious scholars who have been consulted by the government have approved posthumous organ donation for transplantation on the grounds of necessity to save lives even though violating the human body is generally forbidden in Islam. An assessment of the dynamics of biomedicine, religion and culture leads to the conclusion that barriers to posthumous organ donation for transplantation that are perceived to be religious may actually stem from cultural attitudes. The interplay of faith, belief, religion, social norms, rituals and wider cultural attitudes with biomedicine and posthumous organ donation and transplantation is very complex. Although overcoming the barriers to organ donation for transplantation is challenging, initiation of transplantation of vital organs from deceased donors is necessary within Bangladesh. This will ensure improved healthcare outcomes, prevent poor people from being coerced into selling their organs to rich recipients, and protect the solidarity and progeny of Bangladeshi families. (shrink)

In Aotearoa/new Zealand, organ donation and transplantation rates for Māori and non-Māori differ. This article outlines why this is so, and why some groups may be reticent about or object to organ donation and transplantation. In order to do this, I draw on the conceptual and methodological lens of phenomenology and apply what Van Manen calls the existential themes of lived body (corporeality), lived space (spatiality), lived time (temporality) and lived other (relationality and communality) to a discussion of the cultural (...) values and spiritual beliefs of Māori around tissue donation. Specifically, the aim of the article is to encourage non-Māori, who will already be aware that diverse cultural traditions transmit different beliefs about organ donation and transplantation, to recognize the existence of a deeper understanding of what this difference may mean for people on a felt level and how it might impact on lived experience. (shrink)

This paper defends an ‘opt-out’ scheme for organ procurement, by distinguishing this system from ‘presumed consent’ (which the author regards as an erroneous justification of it). It, first, stresses the moral importance of increasing the supply of organs and argues that making donation easier need not conflict with altruism. It then goes on to explore one way that donation can be increased, namely by adopting an opt-out system, in which cadaveric organs are used unless the deceased (or their family) registered (...) an objection. Such policies are often labelled ‘presumed consent’, but it is argued that critics are right to be sceptical of this idea—consent is shown to be an action, rather than a mental attitude, and thus not something that can be presumed. Either someone has consented or they have not, whatever their attitude to the use of their organs. Thankfully, an opt-out scheme need not rest on the presumption of consent. Actual consent can be given implicitly, by one's actions, so it is argued that the failure to register an objection (given certain background conditions) should itself be taken as sign of consent. Therefore, it is permissible to use the organs of someone who did not opt out, because they have—by their silence—actually consented. (shrink)

One way of increasing the supply of organs available for transplant would be to switch to an opt-out system of donor registration. This is typically assumed to operate on the basis of presumed consent, but this faces the objection that not all of those who fail to opt out would actually consent to the use of their cadaveric organs. This paper defuses this objection, arguing that people's actual, explicit or implicit, consent to use their organs is not needed. It borrows (...) David Estlund's notion of ‘normative consent’ from the justification of political authority and applies it to the case of organ donation. According to this idea, when it is wrong to withhold consent to something, the moral force of that lack of consent may be null and void. If it is wrong of a person to refuse to donate their cadaveric organs to others, then it may be that their actual consent is not needed. This supports an opt-out system, which provides protection for those who have genuine reasons to refuse donation, and spares the worries as to what the deceased would actually have wanted. (shrink)

Nudges involve designing social “choice contexts” to promote what “experts” regard as beneficial for individuals and the society, by making the “right” choices easier. The most common form of nudge...

Deceased organ donation is widely considered as a case of easy rescue―that is, a case in which A may bestow considerable benefits on B while incurring negligent costs herself. Yet, the policy implications of this observation remain unclear. Drawing on Christopher H. Wellman’s samaritan account of political obligations, the paper develops a case for a so-called opt-out system, i.e., a scheme in which people are defaulted into being donors. The proposal’s key idea is that we may arrange people’s options in (...) specific ways for the sake of others. (shrink)

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the family plays (...) an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos. (shrink)

Opt-out systems of postmortem organ procurement are often supposed to be justifiable by presumed consent, but this justification turns out to depend on a mistaken mental state conception of consent. A promising alternative justification appeals to the analogical situation that occurs when an emergency decision has to be made about medical treatment for a patient who is unable to give or withhold his consent. In such cases, the decision should be made in the best interests of the patient. The analogous (...) suggestion to be considered, then, is, if the potential donor has not registered either his willingness or his refusal to donate, the probabilities that he would or would not have preferred the removal of his organs need to be weighed. And in some actual cases the probability of the first alternative may be greater. This article considers whether the analogy to which this argument appeals is cogent, and concludes that there are important differences between the emergency and the organ removal cases, both as regards the nature of the interests involved and the nature of the right not to be treated without one’s consent. Rather, if opt-out systems are to be justified, the needs of patients with organ failure and/or the possibility of tacit consent should be considered. (shrink)

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)

Opt-out systems of postmortem organ procurement are often supposed to be justifiable by presumed consent, but this justification turns out to depend on a mistaken mental state conception of consent. A promising alternative justification appeals to the analogical situation that occurs when an emergency decision has to be made about medical treatment for a patient who is unable to give or withhold his consent. In such cases, the decision should be made in the best interests of the patient. The analogous (...) suggestion to be considered, then, is, if the potential donor has not registered either his willingness or his refusal to donate, the probabilities that he would or would not have preferred the removal of his organs need to be weighed. And in some actual cases the probability of the first alternative may be greater. This article considers whether the analogy to which this argument appeals is cogent, and concludes that there are important differences between the emergency and the organ removal cases, both as regards the nature of the interests involved and the nature of the right not to be treated without one’s consent. Rather, if opt-out systems are to be justified, the needs of patients with organ failure and/or the possibility of tacit consent should be considered. (shrink)

Opt-out systems of postmortal organ procurement are often referred to as ‘presumed consent’ systems. A presumption directs us, in a case in which no compelling evidence is available to hold that P, nevertheless to proceed as if P were true, unless there is sufficient evidence that it is false. It is recommended to presume consent in this case, because, in the absence of registered objections of the deceased, it is held to be more probable that she consented than that she (...) did not. Whether this suggestion makes sense, however, turns out to depend on the proper interpretation of the concept of ‘consent’. On a mental state conception of consent we are allowed to presume it if we have reason to suppose the deceased to have been in favour of donation. However, we should rather understand consent to be a public action of authorisation. On that view consent cannot be presumed, and the opt-out systems as we presently know them on the European continent and elsewhere do not satisfy the requirement that the deceased should have consented to the removal of his organs. (shrink)

In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned (...) afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. (shrink)

ZusammenfassungIn der ethischen Debatte um die Forschung mit Biobanken wird selten zwischen verschiedenen Biomaterialien differenziert. Vor diesem Hintergrund widmet sich die vorliegende qualitative Interviewstudie erstmals den praktischen Herausforderungen, die sich bei der Sammlung von postmortal gewonnenem menschlichem Gehirngewebe zu Forschungszwecken aus Sicht von in diese Praxis involvierten Experten in Deutschland stellen. Im Zentrum der ethischen Analyse stehen Herausforderungen der Spenderrekrutierung, der Kommunikation über eine Gehirnspende sowie der informierten Zustimmung. Unsere Ergebnisse relativieren zum einen die Annahme eines sogenannten Spendermangels, insofern insbesondere (...) Kliniker eine Gatekeeper-Rolle bei der Spendergewinnung innehaben. Deren Einstellungen sollten daher als ein die Praxis unmittelbar beeinflussender Faktor stärker berücksichtigt werden; zudem sollten im Wissen um bestehende moralische Vorbehalte Ansätze zur Verbesserung der professionellen Kommunikation entwickelt werden. Bezüglich der Regelung der Einwilligung in postmortale Forschungsspenden wurde in unserem Sample das Bemühen deutlich, den ethischen Vorrang der Organspende nicht zu gefährden und die Postmortalspende vor Assoziationen mit der Organspende zu bewahren. Zur Sicherung des Vertrauens in die Forschung sowie der Autonomie von Spendern befürworteten die Experten nicht nur die Anwendung einer Zustimmungsregelung, sondern auch ein den Familienangehörigen explizit eingeräumtes Recht, einer Gehirnspende selbst dann zu widersprechen, wenn der Verstorbene seine Zustimmung erteilt hat. Die Erfahrung zeigt, dass eine offene Kommunikation über das Erfordernis eines familiären Konsenses zu einer hohen Akzeptanz des Spenderwillens in der Praxis führt. Daher könnte ein solcher, auf den Dialog von Spender und Angehörigen zu Lebzeiten bauender Ansatz auch instruktiv für die Realisierung von Spenden im Kontext der Organspende sein. (shrink)

There has been considerable debate over regulated organ markets. Especially current markets, where people sell one of their kidneys while still alive, have received increased attention. Futures markets remain an interesting and under-discussed alternative specification of a market-based solution to the organ shortage. Futures markets pertain to the sale of the right to procure people’s organs after they die. There is a wide range of possible specifications of the futures market. There are, however, some major unaddressed efficiency concerns. This article (...) presents this class of concerns and discusses the implication for organ futures markets. It identifies a number of inefficiency sources pertaining to crowding out, bad organs, costs and missed opportunities, family refusals, moral hazard and strength of the provided incentive. However, a complete assessment of futures market requires better knowledge regarding the potential reaction from donors, families and health professionals. (shrink)

In December 2015, Wales became the first country in the UK to move away from an opt-in system in organ procurement. The new legislation introduces the concept of deemed consent whereby a person who neither opt in nor opt out is deemed to have consented to donation. The data released by the National Health Service in July 2017 provide an excellent opportunity to assess this legislation in light of concerns that it would decrease procurement rates for living and deceased donation, (...) as well as sparking an increase in family refusals. None of these concerns have come to pass, with Wales experiencing more registered donors, fewer family refusals and more living donations. However, as the number of actual donors has dropped slightly from a high level, the situation must be monitored closely in the years to come. (shrink)