On March 19 and 20, 2013, I had the privilege of speaking at
American Medical Informatics Association ("AMIA") 2013 Summit on Translational Bioinformatics in San Francisco. Organized by the brilliant and masterful
Dr. Jessica D. Tenenbaum, Associate Director of Bioinformatics at the
Duke Translational Medicine Institute ("DTMI"), the Summit was a huge success. Here is the abstract of the March 19, 2013, panel on which I spoke:
TBI-LB03: Late Breaking Session - That's My Data! Navigating Ownership, Sharing, and Translation in the Genomic Era
Panelists: Kelly Edwards, University of Washington; Hank Greely, Stanford University; Barbara Koenig, University of California at San Francisco; Andrew W. Torrance, MIT Sloan School of Management/University of Kansas School of Law
In this era of big data, genomic medicine is enabling personalized approaches to diagnostics and therapeutics in ways never before possible. But with these advances come critical ethical, legal, and social issues around data use. Who owns this data and the new knowledge to which it gives rise? What obligations do researchers have toward participants? What information should researchers be sharing with patients, participants, and society more broadly? Are there novel models of partnership and engagement that can build trust? Where does nature end and intellectual property begin? How are parallel efforts on the consumer market disrupting usual clinical care? These questions must be addressed by researchers and society alike if we are to harness the power of genomic and large-scale clinical data capabilities in ways that are trustworthy and impactful.
In this panel, legal, social, and ethics scholars will speak to issues of data sharing, community engagement, returning results, gene patenting and ownership, and direct-to-consumer movements. Each member of the panel consults actively on large-scale data-driven research projects and is at the front lines of shaping governance processes that will facilitate, rather than hinder, our ability to utilize big data to impact health.
In order for the best technology and science in the world to come to bear on human health issues, partners across clinical groups, researchers, policymakers, and society at large must be engaged. This panel discussion will frame emerging issues in the field with researchers and advance further stakeholder engagement.
My fellow panelists were superb. It's comforting to know that a field as vitally important to the future of medicine as bioinformatics is being actively studied by scholars as insightful as Kelly, Barbara, and Hank. The challenges and opportunities presented by the dawning age of big biological data need their considerable talents and expertise.
