What your doctor isn't telling you about your DNA

Across the country, a small but growing number of doctors are turning to increasingly sensitive genomic tests to pinpoint the root causes of young patients’ mystifying symptoms. But many still don’t know how to handle results unrelated to the ailments that prompted such sequencing. “If you’re looking in the area of chromosome 17 and BRCA1 [a breast-cancer gene] is nearby, you can’t ignore it,” says Barbara Bowles Biesecker, director of the genetic-counseling program at the National Human Genome Research Institute (NHGRI), which is housed on the campus of the National Institutes of Health. “What are you going to do, put blinders on and not look to the left?”

Encountering all these unexpected results has called into question the traditional approach to bioethics—to share unexpected findings only if they’re life threatening or treatable. “We think that premise is nonsense,” says Misha Angrist of the Duke Institute for Genome Sciences & Policy. Angrist was among the first people to have his genome sequenced in 2009 as part of the Personal Genome Project, which aspires to publish the genetic codes of 100,000 volunteers as a way to boost research into personalized medicine. “Parents should be given access to this information that’s derived from their bodies and their children’s bodies. This information is for everyone. It’s scary because we have chosen to make it scary. We exacerbate it by treating it like the bogeyman.”