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

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.

Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe

“…Public awareness also affects potential donors and their relatives' autonomy, and it may influence attitudes such as trust and willingness to donate that are crucial for the success of any transplant system (9,10). For example, an information deficit about the role of the family may create an inner tension in the system, hinder the autonomy of the decision to donate, and amplify moral ambivalence and reluctance towards organ donation (11).…”

Social Exclusion, Epistemic Injustice, and Intellectual Self-Trust

“…1080/02691728.2021.2004620 Hilbrich and Hansen's analysis shows, the general narrative of organ transplantation deprives relatives of organ donors from making sense of some of their practical experiences within the system because this narrative contradicts the actual practice. This leads to confusion, uncertainty, the inability to act, and make decisions and thus undermines their wellbeing (Hilbrich and Hansen 2021).…”

“…Penultimate draft -please only cite the published version available at https://doi.org/10. 1080/02691728.2021.2004620 13 because they lack the relevant information about the actual practice of organ-donation and their role as relatives in this practice (Hilbrich and Hansen 2021). Rather the situation is structurally opaque because the relevant information is not officially available -neither for relatives nor for medical professionals that do not happen to be insiders of the organ donation system.…”

Family bereavement and organ donation in Spain: a mixed method, prospective cohort study protocol

“…In most countries, families play a decisive role in the decision about organ recovery from deceased individuals. They may act as surrogate decision-makers when the wishes of the deceased are unknown or even override their preferences in some cases 1 2. In Spain, the country with the highest donation rates in the world,3 although donor transplant coordinators ask relatives whether the deceased had expressed any preference regarding donation, the final decision on organ recovery is often based on the family’s wishes or on what they believe the deceased would have wanted 4…”