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Geneticist Charles Danko turned to Twitter recently to ask for help in convincing his institutional review board (IRB) at Cornell University in Ithaca, New York, that he should be allowed to let his study participants download their genetic information, tweeting: “Writing IRB amendment to give subjects their genomic data. IRB does not like. Suggested reading to make the case?”
Several scientists responded to Danko’s request, including computational geneticist Yaniv Erlich at Columbia University in New York, who pointed out that direct-to-consumer (DTC) genetics companies such as 23andMe already give people their data.
Researchers, regulators and companies have long debated how much genetic information people should receive. Some say that raw data could be misinterpreted because of the difficulty of accurately predicting disease risk on the basis of genetics. After two years of review, in October the U.S. Food and Drug Administration allowed 23andMe, based in Mountain View, California, to offer a limited number of health-related genetic tests to the public. A June study in the journal Public Health Genomics noted that customers generally understand such genetic results. However, a paper in the Journal of the American Medical Association reported that even clinicians can find it difficult to interpret whole genome scans.
Read full, original post: Should DNA donors see their genomic data?