University of Washington Center for Mendelian Genomics

Volunteer for a clinical trial and your body will be poked, prodded, scanned, and analyzed. But you’re unlikely to get any of the results. A small but influential band of activists has been pushing hard to change that — and they’re starting to get traction. The research establishment has long opposed giving volunteers access to their data, even though that’s supposed to be part of the arrangement. Some worry that it’s too easy for laypeople to misinterpret test results, while others maintain that it’s a waste of resources to organize data for individual review...

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