US National Institute of Health Policy on Genomic Data Sharing

NIH Genomic Data Sharing Policy

Genomic research advances our understanding of factors that influence health and disease, and sharing genomic data provides opportunities to accelerate that research through the power of combining large and information-rich datasets. To promote robust sharing of human and non-human data from a wide range of genomic research and to provide appropriate protections for research involving human data, the National Institutes of Health (NIH) issued the NIH Genomic Data Sharing Policy (GDS Policy) on August 27, 2014 in the NIH Guide Grants and Contracts (available at http://grants.nih.gov/grants/guide/notice-files/NOT-OD-14-124.html), and in the Federal Register (available at https://federalregister.gov/a/2014-20385) on August 28, 2014. The GDS Policy and related documents are available at:

• GDS Policy PDF
  
• Preamble to the GDS Policy
  
• Supplemental Information to the GDS Policy
  
• NIH Press Release on the GDS Policy
  
• NIH Guide Notice on Implementation of the GDS Policy for NIH Grant Applications and Awards
  
• NIH Guide Notice on Development of Data Sharing Policy for Sequence and Related Genomic Data
  

The GDS Policy applies to all NIH-funded research (e.g., grants, contracts, intramural research) that generates large-scale human or non-human genomic data, regardless of the funding level, as well as the use of these data for subsequent research. Large-scale data include genome-wide association studies (GWAS), single nucleotide polymorphisms (SNP) arrays, and genome sequence, transcriptomic, epigenomic, and gene expression data. Supplemental Information to the GDS Policy provides examples of genomic research projects that are subject to the Policy.