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ABSTRACT
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.
Acknowledgments
We would like to thank all participants for their willingness to take part in an interview thus making this research possible. Furthermore, we would like to sincerely thank Silke Schicktanz, Frank Adloff, and two anonymous reviewers for their comments and constructive feedback. Moreover, we would like to express our thanks to Madeleine Quindeau and Leonhard Anzinger, who were very committed to the joint analysis of the empirical data; and to Larissa Pfaller, who conducted the interviews.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1. Thus, we explicitly include new family models such as shared parenthood, LGBTQI-couples, etc.
2. The opt-in model can also be found in other countries, e.g., Switzerland, Australia, Denmark, or the US. However, many countries have switched to opt-out in the last years, amongst them the Netherlands, Wales, and England. Other countries, such as Spain and Austria, have operated with opt-out policies since the beginning of their transplantation systems.
3. A major point of the ethical debate is whether persuasion or nudging into consent is legitimate in a situation where the family is asked for their approval and/or to act on the behalf of the donor (in case the donor’s preferences are not known) (Rodríguez-Arias and Morgan Citation2016). While some have recently argued that it is morally legitimate to nudge a family into consent to organ donation (Sharif and Moorlock Citation2018), others have strong moral doubts (Truog Citation2012).
4. Still, also among possible 1.371 organ donors in Germany in 2019, there were 293 cases where the relatives did not consent to the donation after determination of brain death (Deutsche Stiftung Organtransplantation Citation2020, 60).
5. For an overview of different qualitative methodologies and research designs, see e.g. Creswell et al. (Citation2007).
6. The project also conducted nine focus groups in addition to individual interviews. In this paper, we do not include them for pragmatic reasons.
7. The guideline was developed in close cooperation of all project partners and members of the research team.
8. We have observed debates of the German Ethics Council as well as political debates and public discussion events with physicians regarding the legal amendment of the German Transplantation Act. Unfortunately, however, describing the genesis of the legal debate in Germany is beyond the scope of this analysis.
9. In the following, we refer to epistemic opacity as vagueness concerning knowledge gaps about a specific phenomenon. We emphasize the connection between knowledge and decision-making competence in ethically sensitive issues. Nevertheless, we would like to point out there is a discourse on epistemic opacity referring to the reliability and trustworthiness of computer simulations (see e.g. Durán and Formanek (Citation2018), Lehnhard (Citation2019)).
10. See www.initiative-kao.de.
11. One could perhaps go so far as to say that the exclusions lead to a loss of rationality, that more and more irrational arguments are ventilated among the excluded, as is evident in various social settings, such as the discussion about the coronavirus.
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Iris Hilbrich
Iris Hilbrich is a research associate at the Humanities Centre for Advanced Studies ‘Futures of Sustainability’ at the University of Hamburg. Her research focuses on biomedical research, sustainability, science and technology studies and participatory research methodologies.
Solveig Lena Hansen
Solveig Lena Hansen is a lecturer for ethics at the University of Bremen, Faculty 11 (Human and Health Sciences). Previously, she was a research associate at the University Medical Center Göttingen, where she is currently completing her habilitation. Her research topics include ethical aspects of health communication, obesity, organ transplantation, and fictional narratives.