jump into the fray with a controversial topic, the Presidential Commission for the Study of Bioethical Issues published a report this afternoon on how to handle incidental findings, discovered on the DNA of an individual, and other information related to health that arise during the hunt for something else. These potentially problematic results could include an individual's risk of certain cancers, the chances of transmitting a deadly disease to his children, or a chromosomal abnormality that could cause infertility. Incidental findings have attracted increasing attention and concern of late, particularly in genetics, where large genome scans turn unexpected information that nobody really knows what to do with.
The bioethics commission, chaired by Amy Gutmann, president of the University of Pennsylvania, says that doctors, researchers and companies selling DNA tests need to reframe the way they think all this: of course, nobody knows what will be buried in a given gene sequence, that ancillary conclusions can be part should hardly be a surprise. Practitioners, the Commission contends, should be prepared to discuss this possibility with patients or research subjects. Gutmann wrote an article in this week's issue of Science summarizing the rationale for the recommendations.
The commission has left some of the stickier details to others, who conclusions to return, for example, and if biobanks have an obligation to provide fortuitous discoveries to people whose DNA they store and share. In general, the commission recommended that researchers, doctors and companies describe the findings to potential beneficiaries that might occur; that beneficiaries have a say if they get these results back; and research continues on incidental findings to determine how common certain variants of DNA, for example, could be in the general population. A full list of recommendations can be seen here with the full report.
The Committee suggests that the researchers had the right to exclude studies of people who do not want potentially lifesaving results returned to them and wondered if the researchers have a legal obligation to return some conclusions and can be sued if they do not.
The new report is the latest in a pile more and more to try to clarify the issue. This spring, a group of geneticists urged laboratories to actively seek incidental findings, as some genes predisposing to breast cancer and ovarian cancer, and return the results if people want it or not. That's something the bioethics commission did not support. As science that picks incidental findings moves fast, decision makers do what they can to follow.
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