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UC Comment Letters

UC Office of the President

University of California Response to NIH Request for Information on Draft NIHControlled-Access Data Policy and Proposed Revisions to NIH Genomic Data Sharing Policy(NOT-OD-26-023)

Abstract

This comment letter responds to the National Institutes of Health (NIH)'s Request for Information on the Draft NIH Controlled-Access Data Policy and Proposed Revisions to the NIH Genomic Data Sharing (GDS) Policy. The University of California (UC) supports NIH’s goals of strengthening participant protections, harmonizing data-sharing requirements, and promoting responsible data stewardship, but recommends substantial clarification and additional stakeholder engagement before finalization. UC expresses concern about ambiguous policy scope, implementation costs, consent requirements, security obligations, and treatment of de-identified, legacy, and genomic data, and urges NIH to adopt clearer, risk-based, and operationally feasible approaches.


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