Brain banking for research-an empirical-ethical analysis of practical challenges

Definition of the problem The ethical debate on research biobanking rarely differentiates between different types of biomaterials. Against this background, this qualitative interview study provides insights into the practical challenges of collecting postmortem human brain tissue for research purposes from the viewpoints of experts involved in the practice of brain banking in Germany. In particular, we discuss challenges regarding donor recruitment, communication about brain donation and informed consent from an ethical perspective. Results On the one hand, our results put into perspective the assumption of a so-called donor shortage, insofar as particularly clinicians were found to take on the role of a gate-keeper for the recruitment of donors. With regard to the regulation of informed consent for postmortem research donations, the experts in our sample highlighted the need to maintain the ethical priority of organ donation and were careful to avoid associations of postmortem research donation with organ donation. In order to ensure trust in research and the autonomy of donors, arguments were not only provided in favor of an opt-in approach, but also the right of family members to object to brain donation even against the wishes of the deceased. Conclusion Clinicians' attitudes must be taken into account as a relevant factor influencing the recruitment of brain donors. Approaches that aim to improve professional communication must be particularly reflective of existing moral reservations amongst clinicians. The experience of brain banking experts shows that open communication about the need for familial consent leads to high acceptance of the donor's wishes in practice. Therefore, approaches that build on a dialogue between family members and potential donors during their lifetime could also be instructive for the realization of donations in other contexts, e.g. organ donation.