Organ procurement policy from the recently deceased recasts families into gatekeepers of a scarce medical resource. To the frustration of organ procurement teams, families do not always authorize organ donation. As a result, efforts to increase the number of organs available for transplantation often seek to limit the authority of families to refuse organ retrieval. For example, in some locales if a deceased family member has satisfied the legal conditions for first-person prior assent, a much looser and easier standard to (...) satisfy than informed consent, organ retrieval may proceed despite the family’s objections. Some countries have replaced voluntary consent to organ donation with forms of organ conscription. Often referred to under the misnomer “presumed consent,” such policies legalize the harvesting of organs at death, unless individuals exercise official options to opt out. As this article explores, however, there are good grounds for affirming the authority of the family to consent to or to deny organ donation on behalf of recently deceased family members, as well as to reject first-person assent and “presumed consent” policies of organ procurement. Insofar as individuals have failed clearly and competently to provide informed consent to organ donation, moral authorization for the use of the person and his body ought to be grounded on the foundational authority of the family, rather than the state’s supposed interests in obtaining organs for transplantation. (shrink)

The question of whether individuals retain interests or can be harmed after death is highly contentious, particularly within the context of deceased organ retrieval, retention and use. This paper argues that posthumous interests and/or harms can and do exist in the Konkomba traditional setting through the concept of ancestorship, a reputational concept of immense cultural and existential significance in this setting. I adopt Joel Feinberg’s account of harms as a setback to interests. The paper argues that a socio-culturally sensitive regulatory (...) framework does not necessarily exclude the donation of human biomaterials for transplant and science research. Indeed, when customary values are explored with open-mindedness and sensitivity it may be shown that such donation can form part of the important customs of some communities in this jurisdiction. Accordingly, a context-appropriate governance framework could utilise the cultural value of ancestorship as an incentive to encourage organ donation in the Ghanaian traditional setting. (shrink)

A chief objection to opt-out organ donor registration policies is that they do not secure people's actual consent to donation, and so fail to respect their autonomy rights to decide what happens to their organs after they die. However, scholars have recently offered two powerful responses to this objection. First, Michael B Gill argues that opt-out policies do not fail to respect people's autonomy simply because they do not secure people's actual consent to donation. Second, Ben Saunders argues that opt-out (...) policies do secure people's actual—if not explicit—consent, provided that certain conditions are satisfied. I argue that Gill and Saunders’ arguments are not successful. My conclusion does not imply that jurisdictions should not implement opt-out policies—their failure to secure people's actual consent may be outweighed by other considerations. But, my conclusion does imply that Gill and Saunders are mistaken to claim that opt-out policies are respectful of people's autonomy. (shrink)

Bioethicists often remind health care professionals to pay close attention to issues of diversity and inclusion. Approaches to ethics consultation, where the perspective of the bioethicist is taken to be more morally correct or necessarily authoritative, have been critiqued as inappropriately authoritarian. Despite such apparent recognition of the importance of respecting moral diversity and the inclusion of different viewpoints, authoritarianism is all too often the approach adopted, especially as bioethics has shifted evermore into concerns for public policy. Yet, secular values (...) and philosophical principles are not morally neutral; nor are the private moral convictions of bioethicists. Such analysis is always grounded in particular understandings of the right and the good, the virtuous and the just. Critical examination of common treatments and new alternatives is essential for the careful scientific practice of medicine. The same is true with regard to bioethics. Stagnating in customary or accepted claims of a common secular morality or a standard set of bioethical principles out of an unwillingness to explore the real diversity of moral thought, including traditional religious and cultural worldviews, fails to tap the human capacity to find innovative solutions to the complex challenges facing medicine. (shrink)

This paper explores ethical challenges encountered when conducting research about, and telling, the stories of individuals who had died before the research began. Cases were explored where individuals who lived alone had died alone at home and where their bodies had been undiscovered for an extended period. The ethical review process had not had anything significant to say about the deceased ‘participants’. As social researchers we considered whether it was ethical to involve deceased people in research when they had no (...) opportunity to decline, and we were concerned about how to report such research. The idea that the dead can be harmed did not help our decision-making processes, but the notion of the dead having limited human rights conferred upon them was useful and aided us in clarifying how to conduct our research and disseminate our findings. (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)