Genomic and Health Data: Global Sharing and Local Governance

Saturday, February 18, 2017: 1:00 PM-2:30 PM
Room 309 (Hynes Convention Center)
Genomic and health-related data from millions of individuals can lead to targeted new therapies. But these data are kept in silos as a result of incompatible formats. Innovative networking models and technologies can facilitate discovery of and access to data in a secure manner. How can data-sharing policies help to realize the potential of these technologies? The Global Alliance for Genomics and Health (GA4GH) -- an international coalition of academia, industry, and patient groups -- aims to foster a culture of data-sharing between researchers and clinicians. The GA4GH has drawn up an international Framework for Responsible Sharing of Genomic and Health-Related Data that balances individual privacy, recognition for researchers, and the right of citizens to benefit from the progress of science. This framework is supported by broad consent models that allow participants to contribute data to a governed research commons and dynamic consent models that provide tiered online options to share (or not). Yet pressing policy questions remain. What incentives and infrastructure are needed to facilitate data sharing? How do we reconcile the need for scalable global data sharing with the reality of local governance? This session considers how funding agencies, journals, regulators, health payers, and patient groups are moving to influence data-sharing policy, while in the process recalibrating the notion of who “owns” genomic data.
Bartha Knoppers, McGill University
Adrian Thorogood, McGill University
Anne Cambon Thomsen, France National Center for Scientific Research
Bartha Knoppers, McGill University
A Human Rights Foundation for Global Data Sharing
Robert Cook-Deegan, Arizona State University
Beyond Bermuda: Policies to Promote Data Sharing