Session 8 - Participants’ Perspectives and the Evolution of Genomic Data Sharing Policies

Sharing genomic research data is critical for translating research findings into knowledge, products, and procedures that improve human health, and according to recent studies, patients are supportive of data sharing. In this session, Dr. Majumder will discuss research participants’ perspectives on data sharing and the evolution of genomic data sharing policies.

Learning objectives

At the end of this session, participants will be able to:   

1. Identify some of the sources of diversity in perspectives on genomic data sharing elicited through quantitative and qualitative research. 
2. Describe broad trends in U.S. National Institutes of Health genomic data sharing policies over the past two decades. 
3. Describe strategies that may increase participant willingness to share data. 
4. Discuss the spectrum of approaches to participant integration in data governance. 

About the speaker:

Mary Anderlik Majumder, J.D., Ph.D., is professor of medicine in the Center for Medical Ethics and Health Policy at Baylor College of Medicine, Houston, Texas. She received an A.B. magna cum laude from Bryn Mawr College in 1985, a J.D. from Yale Law School in 1989, and a Ph.D. in Religious Studies with a specialization in ethics and biomedical ethics from Rice University in 1997. Her research interests include the ethical, legal, and social implications of new genomic and other cutting-edge technologies and ethical, policy questions related to problems of cost, quality, and access in health care, and attention to social drivers of health.