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"A Double-Edged Sword”: Genetic Data Sharing and Implications for the Learning Health System

Thursday, December 1, 2022

12:00 pm - 1:30 pm ET

Great Lakes Room, Palmer Commons, 4th floor

100 Washtenaw Ave., Ann Arbor, MI

Kayte Spector-Bagdady, JD, MBioethics
Interim Co-Director, Center for Bioethics & Social Sciences in Medicine Assistant Professor, Obstetrics & Gynecology
University of Michigan Medical School

In contrast to the laborious and expensive process of generating genetic datasets de novo, academic genetic researchers are increasingly using large and inexpensive “secondary” research datasets held by government, consortia, and industry for their work. Choosing between different kinds of data providers is about more than just convenience, however, it can also have important implications for the kind of science advanced and to which communities it will generalize. This talk will explore the factors driving researchers to select certain datasets for their work as well as their experiences sharing to, as well as using, shared data resources. As researchers wait for the new National Institutes of Health’s “Policy for Data Management and Sharing” to go into effect in January 2023, this talk will explore who ultimately carries the burden of increasing data sharing requirements

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