The NIH Genomic Data Sharing (GDS) Policy has been in effect since August 27, 2014. It requires that grantees plan and carry out broad, responsible, and timely sharing of genomic research data generated from NIH-funded research.
Effective January 25, 2023, the Final NIH Policy for Data Management and Sharing (DMS) will govern all scientific data management practices and encourage grantees to maximize the appropriate sharing of scientific data generated from NIH-funded research, with justified limitations or exceptions.
NIH will soon adjust the GDS policy to better align with expectations set by the new DMS policy; for example, identifying an ideal balance between data sharing and patient privacy.
You have a role to play. Through Request for Information (RFI) on Proposed Updates and Long-Term Considerations for the NIH Genomic Data Sharing Policy, NIH invites community input on possible revisions to the GDS policy.
The RFI is collecting feedback in four broad areas:
- Maximizing Data Sharing While Preserving Participant Privacy and Preferences
- Expectations for Alternative NIH-Supported Genomic Data Management and Sharing Resources That Store Human Genomic Data
- Policy Harmonization of GDS and DMS Policy
- Long-Term Consideration of the Scope of GDS Policy
For each area, the RFI explains NIH’s reasons for scrutiny before listing specific question prompts, e.g., should the GDS policy’s timeline to share human genomic data be relaxed to match the timeline to share scientific data established by the DMS policy?
Submit your feedback by February 28, 2022, using the form at Request for Information on Proposed Updates and Long-Term Considerations for the NIH Genomic Data Sharing Policy. Responses to this RFI are voluntary. Do not include any proprietary, classified, or confidential information in your responses.
Direct any questions to SciencePolicy@mail.nih.gov.