‘Saying no to organ donation’: an empirical typology of reluctance and rejection

Abstract

In Germany, as well as in other countries, organ shortages are usually explained by a relative unwillingness to donate among a population which is assumed to be caused by a lack of information and mistrust of the system. As we can see in the data of our qualitative research (focus groups and interviews), lack of information or mistrust are not the only reasons for people to be reluctant to agree to the donation of their organs after death. In fact we can identify four positions: (1) information deficit; (2) mistrust; (3) no killing; and (4) bodily integrity. The first and second are the two prominent explanations in the public discourse about low donation rates. The third and the fourth instead have neither been adequately articulated nor been discussed as a proper argument. Therefore, by means of sociology of critique, we discuss their contribution to the discourse as comprehensible reasons for reluctance and present them as credible positions of criticism: These two positions illuminate fundamental and universal values of the inviolability of the person and human dignity. Thus, both positions are consistent and morally justifiable and should be addressed with sensitivity.

The View of the Three Monotheistic Religions Toward Cadaveric Organ Donation

“…Determination of death is contingent solely upon brain death. In contrast to Judaism and Islam, Christianity does not regard the body of the deceased person as possessing special sanctity; however, because of the custom of viewing, where the deceased is displayed in an open coffin prior to burial, Christians may refuse post-mortem organ procurement (Pfaller et al, 2018).…”

Explorations about the Family’s Role in the German Transplantation System: Epistemic Opacity and Discursive Exclusion

“…Their claims mainly refer to the lack of institutional embeddedness of relatives in the transplantation system. On a continuum of different forms of criticism, their position can be regarded as discourse-internal form of critique (Hansen et al 2018;Adloff and Pfaller 2017;Pfaller et al 2018) because it does not fundamentally question the practice of organ donation. The claims stay within the realm of 'utterable' positions within the public and medical discourse (see Schicktanz and Wöhlke 2017).…”

“…They have professionalized their criticism of organ donation and hold their own symposia and conferences. 10 Their position is not recognized in the official debates and is therefore to be understood as external to the discourse (Hansen et al 2018;Adloff and Pfaller 2017;Pfaller et al 2018;Adloff and Hilbrich 2019).…”

“…Who claims interpretive sovereignty in the discourse thus determines the legitimacy or illegitimacy of speaker positions (ibid.). In the context of the debate about organ donation, these are primarily the medical and political actors (Hansen et al 2018;Pfaller et al 2018;Adloff and Hilbrich 2019). Withdrawing from the discourse or even being actively excluded from it by hegemonic actors, the association and the professional appearance opens up a protected space of discourse for the active critics, where they can share their experiences and support each other's arguments.…”

Assembling organ donation: situating organ donation in hospital practice

“…2019, Galasinski and Sque 2016,, Haddow, 2005, Pfaller et al . 2018, Sanner 2001, Shaw 2010, 2015, Siminoff 2004, Sque et al . 2008).…”