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Updated: Jun 9, 2025

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"A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data
Kayte Spector-Bagdady1, Kerry A Ryan1, Amy L McGuire2
1UNIVERSITY OF MICHIGAN, ANN ARBOR, MICHIGAN, USA.
Abstract:
As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S. academic genetic researchers (n=23) found that the burden, translation, industry limitations, and consent structure of data sharing remain major governance challenges.
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