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ADVANCE Discourse: Lab

New NIH Genomic Data Sharing Policy

Published December 11, 2014 5:23 PM by Michael Jones

In the age of readily available genetic sequencing, the overabundance of data has been noted around the globe. As big data solutions become more common and diverse, the concept of data sharing has been a focal point of discussions regarding the future of research. A recent release from the National Institutes of Health (NIH) announced the introduction of a final Genomic Data Sharing (GDS) policy. The GDS will replace the previous standard, the Genome-Wide Association Studies’ (GWAS) data sharing policy. 

“Advances in DNA sequencing technologies have enabled NIH to conduct and fund research that generates ever-greater volumes of GWAS and other types of genomic data,” said Eric Green, MD, PhD NHGRI director, report co-author and co-chair of the trans-NIH committee that developed the GDS policy, in the release. “Access to these data through dbGaP [Database for Genotypes and Phenotypes] and according to the data management practices laid out in the policy allows researchers to accelerate research by combining and comparing large and information-rich datasets.”

According to the NIH release, as well as another article from the American Association of Clinical Chemistry (AACC), one of the major concerns facing the new policy was assurance of patient privacy. In order to alleviate these concerns, the new policy requires a two-tiered system to ensure both anonymity for the donors and a wide variety of use for the information available to researchers. The data must be de-identified, and researchers are expected to obtain informed content prior to releasing that information for further research. Additionally, scientists are encouraged to obtain the broadest possible permissions in the potential sharing of patient data.  

“Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics, and therapeutics for patients,” continued Kathy Hudson, PhD, NIH deputy director for science, outreach and policy, in the NIH release. “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 instruments that are using the date and also encourages researchers to get consent from participants for future unspecified use of their genomic data.”

Genomic data represents the future of medicine. With the NIH’s new data sharing policy, researchers will now be afforded less restricted access to data, while patients can rest assured that their individual privacy remains secure. By standardizing and increase the ability to share important genetic information, research can excel both locally and abroad, taking into account larger statistics for research and fostering collaboration between researchers. 


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