Genomic Data-Sharing Practices.

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

J Law Med Ethics

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.

Published: March 2019

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.

Download full-text PDF	Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730666	PMC
http://dx.doi.org/10.1177/1073110519840482	DOI Listing

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