This week, McLean’s ITP team led by Justin Baker, Benjy Silverman, and Francis Shen, were awarded an administrative supplement to study the ethical, legal, and social implications of deep phenotyping research in individuals with mental illness, particularly related to an ongoing U01 grant. The project will focus on Return of Results (RoR) in deep phenotyping studies, which collect a number of longitudinal signals that may represent a form of emerging health information. Over the project period, the team will engage and convene experts from legal, ethical, and research backgrounds to reach consensus around best practices for this new area of mental health related data governance, as it involves engaging participants who may wish to use their own data for purposes other than those intended by the research study.
The supplemental project was sponsored by the NIMH in response to PA-19-217.