NIH issues Request for Information on Genomic Data Sharing Policy update by February 28th, 2022, as it strives to maintain balance between confidentiality and maximizing scientific advances from human genomic data.
Moving towards a new era of data sharing at NIH
Large-scale human and non-human genomic data are a rich resource for the scientific community to generate further knowledge and products and procedures for improving human health. However, human genomic data sharing needs to be tempered by considerations of informed consent and privacy protections. The National Institutes of Health (NIH) announced its Genomic Data Sharing (GDS) Policy (NOT-OD-14-124) in 2014 to address the delicate balance of promoting data sharing while ensuring privacy protections.
Significant technological advances and policy shifts since 2014 have prompted the NIH to adjust the implementation of the GDS Policy to keep pace with current policy needs. Key technological developments include a growing interest in using more granular data than currently allowed, and the ability to link participant data across various datasets. While beneficial for biomedical research, integrating detailed information such as location, with electronic health records and genomic information increase the risk of participant identifiability. NIH has also released a new Data Management and Sharing (DMS) Policy, effective January 2023, which requires the development of Data Management and Sharing Plans for all NIH-supported research, including data subject to the GDS policy. NIH is seeking public feedback on how to keep the GDS policy current in the face of a shifting landscape of technological and policy developments. The deadline for responses is Monday, February 28.
NIH BRAIN Initiative Funding Opportunity Announcements for data science and standardization
In addition to broader efforts at NIH for data sharing, the BRAIN 2025 report called for establishing platforms for sharing data related to the BRAIN Initiative. BRAIN Initiative applications (new and resubmissions) submitted after March 1, 2020, are required (NOT-MH-19-010) to share the data via the BRAIN Initiative informatics infrastructure. In response, NIH released RFAs related to data archives, two of which have been recently reissued, for Data Archives for the BRAIN Initiative (RFA-MH-20-600; receipt date July 14, 2022) and for Integration and Analysis of BRAIN Initiative Data (RFA-MH-21-135; receipt date June 10, 2022 and October 14, 2022). More details can be found here.