Building a Biomedical Information Commons: Ethical and Policy Issues

A Policy and Ethics Consortium

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About this Event

Access to large public genetic databases is essential to advancing the diagnosis and management of genetic diseases. The largest databases of genetic variants are currently held by proprietary companies, such as Myriad Genetics, who control access to the data and thereby increase the cost of developing new life-saving technologies. Public databases, such as ClinGen, are racing to catch up, but have been criticized as being unreliable, expensive and vulnerable to funding cuts that compromise their upkeep. In this seminar we explore the pros and cons of these two approaches to managing genetic information.


Bob Cook-Deegan, MD
Research Professor in the Sanford School of Public Policy,
Duke University

Robert C. Green, MD, MPH
Director, G2P Research Program in Translational Genomics and Health Outcomes
Brigham and Women's Hospital, Broad Institute, and Harvard Medical School

Heidi L. Williams, PhD
Assistant Professor in Economics, Massachusetts Institute of Technology