NIH data management policy commits to making research results available

The effective date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. The DMS Policy emphasizes the importance of good data management practices, which provide the foundation for effective data sharing and help improve the reproducibility and reliability of research findings. Data sharing is critical because it enables researchers to rigorously test the validity of research findings and strengthens analyzes by combining datasets. Importantly, data sharing enables the reuse of existing data to explore new frontiers of discovery.

Although the policy was published two years ago, many may still be unsure about what exactly this policy means for them. Given the strong commitment of NHGRI researchers to genomic data sharing, the institute believes that the genomics community is poised to craft thoughtful and comprehensive plans that adhere to the DMS Policy.

At its core, the DMS Policy expects all NIH-supported researchers who generate scientific data to submit a DMS plan as part of their funding application or project proposal. Previously, only projects receiving greater than $500,000 per year of funding or those generating large-scale genomic datasets were expected to provide such plans. Once funded, all award recipients are now expected to comply with the DMS plan approved by the institute or center funding that award. Additionally, DMS plans can be updated over the course of the project if circumstances change.

NHGRI is committed to working with the genomics research community to maximize the quality of all data that are shared in accordance with both the new DMS Policy as well as the existing NIH Genomic Data Sharing (GDS) Policy. To that end, the institute has updated its website, genome.gov, to provide relevant information about both data sharing policies in one place. NHGRI has also developed a library of sample DMS plans, which are available here on the NIH Scientific Data Sharing website. For those seeking NHGRI funding, more specific guidance on data sharing is available.

NHGRI also places a high value on sharing metadata and phenotypic data, as well as using data standards whenever possible to facilitate accurate data reuse. In addition, the institute has explicit NHGRI-specific expectations for complying with the GDS Policy, which go beyond NIH’s baseline expectations in a few ways, specifically: (1) there is no minimum threshold for sharing large-scale genomic data; (2) non-human genomic data are subject to the NIH GDS Policy as human genomic data with respect to the timeline of submission and release, and (3) there is the expectation for explicit consent irrespective of when samples were collected.

Finally, NHGRI encourages researchers who will be engaging with new research participants to obtain participant consent for sharing genomic data, either for general research use through controlled-access or for unrestricted access, as appropriate. Researchers should also avoid additional restrictions or requirements that limit sharing.

Additional information about NHGRI’s efforts to promote broad and robust data sharing can be found in the 2022 Genomic Data Sharing Spotlight Series of The Genomics Landscapewhich consisted of 12 entries highlighting topics such as popular NHGRI datasets, the FAIR and CARE Principles, and the importance of using data standards.

Data management and sharing on the scale associated with the NIH DMS Policy are new, and NHGRI staff and grantees will collectively learn over the next few years about the challenges, nuances, and best practices of data sharing. Anyone with questions or suggestions for NHGRI should email [email protected] to share those thoughts.