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Identity is in the details

April 12, 2010 • Posted in Genomic & Genetics Issues

D. Joy Riley, M.D., M.A.

Executive Director

June 2009

Privacy and research are two major concerns in discussions of biobanks.  They are important in another arena as well.  Whenever we are patients in a medical office or a hospital, medical records are created.  Whenever we have blood, other body fluids, or tissue taken, the remnants after testing are usually stored.   Neither of these facts constitutes news.   Novel uses of such information and samples, however, is a newsworthy subject, even if it is seldom read in the popular press.

In 1996, the US Congress made a law, the goal of which was to protect more