Huge US study starts sharing gene findings with volunteers

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Huge US study starts sharing gene findings with volunteers
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Thousands of Americans who shared their DNA for science are about to learn if they have some particularly worrisome genes.

Tools used for DNA testing are pictured in a DNA lab at the forensic science center of the Oklahoma State Bureau of Investigation in Edmond, Okla. on Aug. 1, 2014. Thousands of Americans who shared their DNA for science are about to learn something in return: if they harbor some problematic genes. It's part of a massive National Institutes of Health project to unravel how people's genetics, environments and habits interact to mold their health.

“What are the drivers in that variability?” asked Dr. Josh Denny, who heads the NIH’s “All of Us” study. “The way they change their behaviors in response to the findings, we’ll be able to look at that.” Traditionally such studies are a one-way street -- scientists learn a lot from volunteers who get little personal information in return. But in an unusual move, All of Us participants get to decide if they want to learn health-related genetic findings, long before the study's finished.

Peterson, who volunteered for All of Us before recently becoming the project’s chief of staff, didn’t realize that was a risk for her family. For now, participants only will be given findings they can do something about, such as seeking earlier diagnosis or switching medications. They’ll be offered free confirmatory testing, genetic counseling and help with sharing the information with their physicians and family members.

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