Genetic studies are increasingly able to identify information that could be of benefit to study participants, but many consent forms and other rules often prevent researchers from sharing that information, The New York Times reports. The Times outlines a number of cases in which researchers found that certain study participants had a gene predisposing them to cancer, but the researchers were bound by consent and ethics board rules to not return the results. In addition to consent and ethics issues, the paper adds that many of the results are from research labs, not ones that are certified for clinical analysis. Further, some samples that are used in studies are decades old. "My gut feeling is that there is a moral obligation to return results," says Barbara Koenig from the University of California, San Francisco. "But that comes at an enormous cost. If you were in a study 20 years ago, where does my obligation end?"
The Bind of Incidental Findings
Aug 27, 2012