NIH Revamps Policy On Genomic Data

A new genomic data-sharing policy that NIH released last week will broaden privacy protections for research participants and encourage timely sharing of genomic data. With this move, NIH revised a previous policy and extended it to all NIH research that generates genomic data from human or nonhuman subjects, including cell lines and clinical specimens. The policy will apply to grant applications submitted on or after Jan. 25, 2015. “The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully,” says Kathy Hudson, NIH’s deputy director for science, outreach, and policy. The revamped genomic data-sharing policy was prompted by the huge increase in the quantity of genomic data that are available. It encourages investigators to seek the broadest possible informed consent from study participants for future use of data. Investigators are also urged to share data as quickly and widely as possible. Under the policy, researchers must make nonhuman data publicly available upon publication of their results by depositing it into NIH-designated repositories.