“The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to speed the translation of data into knowledge, products and procedures that improve health while protecting the privacy of research participants.” From post NIH issues finalized policy on genomic data sharing
The policy’s implementation is meant to accelerate biomedical discoveries, while safeguarding patient privacy and data sensitivity. Investigators applying for grant funding in January 2015 will need to supply data-sharing plans prior to the start of their research project.
“Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics, and therapeutics for patients,” said Kathy Hudson, Ph.D., 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.”
Along with statistics about the use of dbGaP data, the Nature Genetics report outlines the challenges facing the field, such as the increased volume and complexity of genomic data.
For a link to the GDS Policy see http://gds.nih.gov.