What is the GWAS policy?
The National Institutes of Health (NIH) Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) calls for investigators funded by the NIH for GWAS to: 1) share de-identified genetic (genotypic and phenotypic) data through a centralized NIH data repository; and, 2) submit documentation that describes how the institutions have considered the interests of the research participants, such as privacy and confidentiality. See also NIH Modifications to Genome-Wide Association Studies (GWAS) Data Access for the August 28, 2008 GWAS policy update.
The policy defines how investigators may submit and request access to GWAS data for research purposes. Investigators using GWAS data from the NIH database are expected to continue to ensure the privacy and confidentiality of the individuals that participated in the original genetic association studies
The NIH policy allows investigators who submit GWAS data to the repository time to analyze and publish their results before additional investigators are permitted to submit manuscripts for publication using those data. Secondary investigators are expected to acknowledge the submitting investigator(s) in all publications utilizing GWAS data.
In the policy, the NIH encourages patents for downstream discoveries that would be necessary to develop products to meet public health needs, while discouraging obtaining a patent for early, pre-competitive information that may impede future research.