September 7, 2008

DAVID KAYE:

Until last Friday, the National Institutes of Health (NIH) and other groups had posted large amounts of aggregate human DNA data for easy access to researchers around the world. On Aug. 25, however, NIH removed the aggregate files of individual Genome Wide Association Studies (GWAS). The files, which include the Database of Genotypes and Phenotypes (dbGaP), run by the National Center for Biotechnology Information, and the Cancer Genetic Markers of Susceptibility database, run by the National Cancer Institute, remain available for use by researchers who apply for access and who agree to protect confidentiality using the same approach they do for individual-level study data.) The Wellcome Trust Case Control Consortium and the Broad Institute of MIT and Harvard also withdrew aggregate data.

The reason? The data keepers fear that police or other curious organizations or individuals might deduce whose DNA is reflected in the aggregated data, and hence, who participated in a research study.

Read the whole thing.

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