Family members can provide crucial support to individuals participating in clinical trials. In research on the “newest frontier” of Deep Brain Stimulation (DBS)—the use of DBS for psychiatric conditions—family member support is frequently listed as a criterion for trial enrollment. Despite the significance of family members, qualitative ethics research on DBS for psychiatric conditions has focused almost exclusively on the perspectives and experiences of DBS recipients. This qualitative study is one of the first to include both DBS recipients and their (...) family members as interview participants. Using dyadic thematic analysis—an approach that takes both the individuals and the relationship as units of analyses—this study analyzes the complex ways in which family relationships can affect DBS trial participation, and how DBS trial participation in turn influences family relationships. Based on these findings, we propose ways to improve study designs to better take family relationships into account, and better support family members in taking on the complex, essential roles that they play in DBS trials for psychiatric conditions. (shrink)

Barnes et al. (2025) emphasize the need for current biobanking consent models to more deeply engage participants who want to determine how their data are used. We appreciate their desire to provide par- ticipants with real-time updates on the status of their data and make the process more accessible. We addi- tionally agree with the goal of making biobanking data more private and secure. However, despite agreeing with the authors on these broader aims, we identify deep moral difficulties with their (...) article on two levels. On one level, we worry that the authors have not engaged deeply enough with some of the constituent parts of their proposal. On a different level, rather than critically examining the use of novel technological methods for managing biobank- ing data, the article instead reads as an effort by the authors to “sell” the underlying technology under the guise of an ethics paper. (shrink)