NOT-OD-26-023: Request for Information on Draft NIH Controlled-Access Data Policy and Proposed Revisions to NIH Genomic Data Sharing Policy

"The National Institutes of Health (NIH) is requesting public input on its proposal to establish harmonized and transparent policy requirements for protecting human participant research data. Specifically, NIH proposes (1) establishing policy requirements for which data should be controlled-access under NIH data sharing policies, and (2) revising the NIH Genomic Data Sharing Policy to simplify and harmonize requirements...

NIH is proposing a new NIH Controlled-Access Data Policy to support the research community in fulfilling NIH data sharing expectations. This proposed policy specifies human participant data types required to be managed via controlled-access and provides criteria for assessing the need for controls for other data types. It also provides a standard set of expectations across NIH Institutes, Centers and Offices to promote maximal responsible human participant data sharing through controlled access while simultaneously responding to emergent privacy and security risks"