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Privacy Is Major Hurdle for Research Group

GENETIC PRIVACY

June 6, 2013

A group of geneticists have established a consortium aimed at creating database of genetic and clinical data that could be accessed by doctors and researchers across the globe, reports The New York Times. Experts from the consortium say the major challenge is a lack of standards for storing and sharing data and for assuring that patients consent to this sharing of their data. “The question is whether and how we make it possible to learn from these data as they grow, in a manner that respects the autonomy and privacy choices of each participant,” said David Altshuler of Harvard and MIT. The group consists of more than 70 medical, research and advocacy organizations active in 41 countries. (Registration may be required to access this story.)
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