Washington Update

NIH Seeks Input on Proposed Updates on Genomic Data Sharing Policy

By: Yvette Seger
Thursday, December 16, 2021
Issued in 2014, the National Institutes of Health (NIH) Genomic Data Sharing (GDS) Policy established expectations to ensure broad, responsible, and timely sharing of genomic research data resulting from research conducted or funded by the agency. As genomic sequencing and related technologies have become increasingly integrated across research activities, the GDS Policy has been adjusted to accommodate the needs of the field. However, recent developments, including NIH’s new Data Management and Sharing Policy, set to go into effect in January 2023, and an increasing interest in using genomic information with higher degrees of identifiability, have prompted agency leadership to reassess the GDS Policy within the current research landscape and ensure alignment with the broader policy on data management and sharing.

On November 30, NIH issued a Request for Information (RFI) seeking stakeholder input on a range of issues pertaining to maximizing data sharing while preserving participant privacy and preferences, data management and sharing principles for NIH-supported resources, harmonization of the GDS Policy with the final NIH Data Management and Sharing Policy, and longer-term scope of the GDS Policy. In conjunction with the RFI, Lyric Jorgenson, PhD, NIH Acting Associate Director for Science Policy, published a blog highlighting the importance of revisiting the GDS Policy in the current research and policy environment and engaging scientists in the discussion of resolutions to address current and future opportunities and barriers.

Comments will be accepted through February 28 and must be submitted using the response form. The current GDS Policy remains effective in its current form until further notice.