Genetics, Health, and Society

Genomic Data Sharing

Advances in DNA sequencing and other high-throughput technologies, as well as a steep drop in DNA sequencing costs, have enabled NIH to fund research that generates greater volumes of genomic data.  In light of these advances, the National Institutes of Health (NIH) decided to extend the current Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) to encompass data from a wider range of genomic research. 

The draft Genomic Data Sharing Policy (GDS Policy) applies to all NIH-funded research that involves human and non-human genomic data produced by array-based or high-throughput sequencing technologies, such as GWAS, whole-genome, transcriptomic, epigenomic, and gene expression data, irrespective of the funding level and funding mechanism (i.e., grant, contract, or intramural support).  The draft GDS Policy describes the responsibilities of investigators and institutions for the submission of non-human and human genomic data to data repositories and the secondary research use of such data.  The draft GDS Policy, like the GWAS Policy, includes a number of provisions to assure the protection of human data.

Additional information about the NIH draft GDS Policy is available on the GDS website.

Policy Documents