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Open Access Publications from the University of California

UC Comments in Response to the Request for Information on Proposed Updates and Long-Term Considerations for the NIH Genomic Data Sharing Policy (NOT-OD-22-029)

Abstract

This comment letter responds to the National Institutes of Health’s request for information on proposed updates and long-term considerations for its Genomic Data Sharing Policy. UC supports modernizing and harmonizing the policy with NIH’s broader Data Management and Sharing Policy but recommends additional public engagement and clearer guidance on genomic data de-identification, privacy risks, data linkage and consent, while seeking to minimize duplicative requirements and administrative burden.