A finalized policy on genomic data sharing was published online Wednesday in the Federal Register by the National Institutes of Health. According to the NIH, the aim of the policy is to "promote data sharing as a way to speed the translation of data into knowledge, products and procedures" that improve health quality and protect participant privacy.
"Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics, and therapeutics for patients," Kathy Hudson, NIH deputy director for science, outreach and policy, said in an announcement. "The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully. The [Genomic Data Sharing] policy outlines the responsibilities of investigators and institutions that are using the data and also encourages researchers to get consent from participants for future unspecified use of their genomic data."
The policy encourages investigators to seek broad sharing permissions from participants for future use of their data. It also is "intentionally general" so as to "accommodate the evolving nature of genomics technologies." Policy (.pdf)