Jumping into the fray of a controversial topic, the Presidential Commission for the Study of Bioethical Issues released a report this afternoon on how to handle incidental findings, discoveries about an individual’s DNA and other health-related information that show up while hunting for something else. Such potentially problematic findings could include an individual’s risk of certain cancers, her chance of passing on a deadly disease to her children, or a chromosomal abnormality that could cause infertility. Incidental findings have garnered increasing attention and concern of late, especially in genetics, where broad genome scans are turning up unexpected information that no one knows quite what to do with.
The bioethics commission, chaired by Amy Gutmann, president of the University of Pennsylvania, argues that physicians, researchers, and companies marketing DNA tests need to reframe how they think about all of this: While of course no one knows what will be buried in a given gene sequence, the fact that ancillary findings may be part of it should hardly be a surprise. Practitioners, the commission argues, should be ready to discuss this possibility with patients or research subjects. Gutmann penned an article in this week’s issue of Science summarizing the rationale behind the recommendations.
The commission left some of the stickiest details to others—which findings to return, for example, and whether biobanks have an obligation to supply incidental findings to the people whose DNA they store and share. In general, the commission recommended that researchers, physicians, and companies describe to potential recipients the findings that might arise; that recipients have a say in whether they get those findings back; and that research continue into incidental findings, to determine how common certain DNA variants, for example, might be in the general population. A full list of the recommendations can be seen here with the full report.
The commission did suggest that researchers had the right to exclude from studies people who didn’t want potentially lifesaving findings returned to them and wondered whether researchers have a legal obligation to return certain findings and can be sued if they don’t.
The new report is the latest in a growing stack trying to clarify the issue. This spring, a group of geneticists urged labs to actively look for incidental findings, such as certain genes predisposing to breast and ovarian cancer, and return those results whether people want them or not. That’s something the bioethics commission didn’t support. As the science that picks up incidental findings moves rapidly, the policymakers are doing what they can to keep up.