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Researcher IDs “Anonymous” Research Subjects and Their Families


January 18, 2013

The New York Times reports on the inherent tension at play in protecting privacy when it comes to data used for medical research. One researcher recently illustrated the challenge of anonymization when he identified five people who had volunteered information to the 1,000 Genome Project, which collects genetic data from volunteers worldwide for research. The researcher used the subjects’ genetic information, ages and regions to identify them and their entire families. Amy McGuire of Baylor College of Medicine said, “To have the illusion you can fully protect privacy or make data anonymous is no longer a sustainable position.” (Registration may be required to access this story.)
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