BioCentury
ARTICLE | Politics & Policy

NIH publishes draft policy on genomic data sharing

September 24, 2013 12:53 AM UTC

NIH published a draft policy with guidelines for the sharing of large-scale genomic data generated from NIH-funded research. The policy applies to human or non-human genomic data generated through array-based and high-throughput genomic technologies. Examples of large-scale sequencing include sequencing more than one gene in 100 or more subjects, or sequencing 10,000 or more genes in a single subject. Under the policy, investigators should submit de-identified human data to NIH-designated data repositories, and NIH will make the data available for secondary research no later than six months after submission or at the time of acceptance of first publication, whichever occurs first. Submitting institutions are charged with determining whether open or controlled access is more appropriate for the de-identified data, considering the informed consent under which the data were collected. Controlled-access data will be available only if investigators obtain NIH approval for a particular research project. ...