NIH reopens genomic database after investigating privacy concerns raised 10 years ago

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The National Institutes of Health will offer researchers unrestricted access to genomic summary results from most of the clinical studies it funds, overturning a previous policy change at the agency.

The NIH had opted to publicly share genomic summary results — which include pooled genomic data, but no individual-level information — with researchers to support future studies. Researchers might analyze this data to investigate which genomic variants contribute to a disease or disorder, for example.

However, in 2008, some researchers raised concerns that unrestricted access to this data posed a privacy concern for patients, and, in an article published in PLOS Genetics, argued the available data provided enough information to allow someone with access to an individual's genomic information to be able to determine whether the individual had participated in a specific research study.

The NIH decided to remove genomic summary results from public access while it investigated these concerns. As part of its assessment, the NIH worked with stakeholders to discuss potential participant risks and solicited feedback from the public.

The agency ultimately decided the clinical and research benefits of providing public access outweighed what it called a "low risk" to privacy.

"Despite the increasing availability of genomic summary results from a variety of sources, we are not aware of any reported examples of individuals being matched to participation in a research study using genomic summary results beyond the research designed to demonstrate the hypothetical possibility that it could happen," reads an NIH blog post announcing the updated policy.

The NIH therefore decided to reopen public access to genomic summary results for most of its studies. However, to address the "small risk of learning information about individual participants in certain types of research," the agency plans to add protections for studies conducted with populations with specific privacy concerns, such as those from isolated geographic areas or with rare traits.

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