Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop

March 1, 2017 | Boston, MA


The Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop, spearheaded by PRIM&R's Public Policy Committee, convened patient advocates, researchers, institutional representatives including institutional review board members, medical journal editors, ethicists, and policymakers to examine how the push to collect, access, share, and use personal data for research purposes across a broad range of contexts presents both new scientific opportunities and raises new ethical challenges. The workshop examined the question of whether our current ethical and regulatory frameworks are adequate for protecting the rights and interests of individuals and their personal information in these emerging domains, and, if not, to begin to articulate what a rethinking of those frameworks might look like.

The day was organized into four substantive parts. Each part comprised a series of very brief presentations by invited panelists, followed by moderated roundtable discussion further exploring the themes of that part.

Workshop Materials

Workshop Proceedings

Written Summary

Video Recordings*

Part I: Perspectives on the value of research employing new approaches to the access, use, and sharing of personal information for research
Part II: Conceptualizing an individual’s rights, interests, and expectations with regard to their health and other data
Part III: Implications for consent, authorization, and data stewardship
Part IV: Responsibilities for ethical oversight of research involving data access, use, and sharing
Part V: Summary and next steps

* This recording contains some strong language. In order to retain the flow and rhythm of the discussion, PRIM&R has opted to leave the exchanges intact rather than remove any profanity used. Please contact us if you have concerns.