MPH’s Clayton Discusses Ethical Concerns behind DNA Test Results
As the tissue samples and DNA of more and more people are shared with researchers, the question of what information buried in those samples to give back is more pressing than ever. Now, a 335-page report from the National Academies of Sciences, Engineering, and Medicine (NASEM) urges researchers and regulators to return more biological data to the people whose samples yielded it in the first place.
The NASEM report suggests ways to ensure accuracy and transparency—something participants have often complained is missing. It urges researchers to carefully consider what will be returned before their study starts, in part based on input from potential participants, and to seek funding accordingly.
Although the goals sound admirable, “The devil is in the details about what it means, taking into account what participants want,” says Ellen Wright Clayton, an expert in law and genetics at Vanderbilt University in Nashville. She has long worried about how returning large swaths of research results will play out for patients, doctors, and payers, and is part of a consortium called eMerge that’s studying this. Because a research volunteer told of a potential prostate cancer biomarker will turn to their doctor for help, it’s those physicians, not the researchers, who deal with the fallout, Clayton points out, even though the doctors didn’t order the tests. “It’s going to be a real challenge to return these results ethically,” she adds, in part because there just aren’t enough genetic counselors to support those receiving hard-to-interpret results. Although some will surely be helped, she says, “we can count on this being disruptive change.”
MPH's Clayton Discusses Ethical Concerns behind DNA tests