Genomic Data-Sharing Practices

Angela G Villanueva; Robert Cook-Deegan; Jill O Robinson; Amy L McGuire; Mary A Majumder

doi:10.1177/1073110519840482

Genomic Data-Sharing Practices

J Law Med Ethics. 2019 Mar;47(1):31-40. doi: 10.1177/1073110519840482.

Authors

Angela G Villanueva¹, Robert Cook-Deegan¹, Jill O Robinson¹, Amy L McGuire¹, Mary A Majumder¹

Affiliation

¹ Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Jill O. Robinson, M.A., is the Research Manager at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. She received her B.A. in sociology and political science and her M.A. in sociology from the University of Houston. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine.

Abstract

Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Confidentiality*
Databases, Genetic / ethics*
Humans
Information Dissemination / ethics*
Informed Consent*
Patient Participation

Abstract

Publication types

MeSH terms

Grants and funding