Donor perspectives on informed consent and use of biospecimens for brain organoid research
Katherine E. MacDuffie, Jason L. Stein, Dan Doherty, Suman Jayadev, Jessica B. Girault, Katherine A. Emmons, Madison R. Glass, Jennifer C. Dempsey, Natasha Marrus, Kelly N. Botteron, Stephen R. Dager, Annette Estes, Joseph Piven, Benjamin S. Wilfond
Abstract
Debates about the ethics of human brain organoids have proceeded without the input of individuals whose brains are being modeled. Interviews with donors of biospecimens for brain organoid research revealed overall enthusiasm for brain organoids as a tool for biomedical discovery, alongside a desire for ongoing engagement with research teams to learn the results of the research, to allow transfer of decision-making authority over time, and to ensure ethical boundaries are not crossed. Future work is needed to determine the most feasible and resource-efficient way to longitudinally engage donors participating in brain organoid research.