Return Of Research Results To Study Participants

By Luke Gelinas, PhD, IRB Chair

Individuals invest a great deal to participate in clinical research, undertaking risks and burdens, while giving of their time and energies to advance scientific knowledge and the public good. Empirical research into participant views and experiences has consistently shown participants desire to learn the results of research to which they’ve contributed.

Despite efforts in recent years to facilitate return of research results to participants, many studies still involve no plans or concerted effort to disseminate results in this way. This may be attributable, in part, to ethical uncertainty over a number of sensitive issues implicated by return of results, especially for participant-level research results like individual labs or screens, biomarker tests, or other individual assessments.