NIH reins in genome access

Written byMegan Scudellari

| 2 min read

The NIH has turned the locks and barred the windows on several previously open access databases of genetic information in response to new research proving it's possible to identify a single individual's genetic profile out of a pool of DNA. Last week in linkurl:PLoS Genetics,;https://www.plosgenetics.org/home.action researchers from the University of California, Los Angles, and the Translational Genomics Institute in Phoenix published a new bioinformatics method for pinpointing an individual DNA profile within an aggregation of 1,000 or more DNA samples. The method uses single nucleotide polymorphisms, genetic irregularities regularly used to study human disease and genetic variation, as markers to probe a mixture of DNA for an individual's genetic signature. In response to the new technology, the NIH has tightened access to databases of pooled sets of genetic data, fearing for research participant privacy. Last August, the NIH linkurl:announced a scheme;https://www.the-scientist.com/news/display/53554/ to make results from genome-wide association studies broadly available to the scientific community. Data from NIH genome-wide association study (GWAS) databases are still available to researchers, just with a new layer of red tape in the way. Originally, the policy stipulated that aggregated genotype data would be available without restrictions, but now, investigators will have to apply for access to such data through the NIH Data Access Committees. The application includes a confidentiality agreement, and access will only be granted for a specific purpose, period, and data set. The NIH's move is purely preemptive: The technique has not been used to compromise NIH databases as far as the agency is aware, according to an NIH press release from August 28th. Those databases include the Cancer Genetic Markers of Susceptibility hosted by the National Cancer Institute, and the database for Genotype and Phenotype operated by the National Center for Biotechnology Information. And the NIH is quick to point out that there isn't much to learn about an individual anyway: records for individuals include only characteristics of a dataset (e.g. control or diseased population), not names or financial information. However, in 2006 when the first NIH GWAS regulations were being established, Robert C. Elston, director of the Division of Genetic and Molecular Epidemiology at the Case Western University School of Medicine, linkurl:told The Scientist:;https://www.the-scientist.com/news/display/25033/ "DNA typing itself is a complete identifier, better than a name and address." Elston, who opposes making genotypic databases available at all, continued, "Anybody could, in principle, find out who that is and match it up from disease and clinical data." Senior author of the PLoS Genetics paper, David Craig, worked with the NIH early on to assess the implications of the new technology. The NIH "took all of this very seriously, even though it really sounds kind of farfetched," Craig told the linkurl:GenomeWeb Daily News.;https://www.genomeweb.com/issues/news/149097-1.html In their Aug. 28th press release, the NIH noted that other organizations with similar databases, such as the Wellcome Trust in England and the Broad Institute at MIT, have also removed aggregate data from public availability.Correction: In the original title of this article, the word "rein" was misspelled. The Scientist has corrected the spelling and regrets the error.

NIH reins in genome access

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