The National Institutes of Health has issued its final policy on genomic data sharing, which emphasizes the need to obtain informed consent from study participants about the possibility their de-identified data will be shared with others for future research.
The policy also includes expectations that researchers seek the most liberal data-sharing permissions from study participants to aid future research.
"Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics and therapeutics for patients," said Kathy Hudson, PhD, NIH deputy director for science, outreach and policy. "The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully. The GDS 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."
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