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Scientists Debating "Informed Consent" in DNA Research

GENETIC PRIVACY—U.S.

April 26, 2010

Recent lawsuits involving biomedical research subjects, including last week's settlement in favor of the Havasupai Indians in a case against Arizona State University, have scientists and bioethicists talking about the need to improve "informed consent" when it comes to large-scale genetic research. The New York Times reports that under federal guidelines, research subjects have a right to know how the genetic material they donate will be used. Studies have estimated that 90 percent of individuals are willing to share their data for biomedical research; however, issues around how to fully inform subjects of the many ways their data might be used, and questions about the inability to fully guarantee privacy, are raising concerns. (Registration may be required to access this story.)
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