Incidental findings should anticipated and described ahead of time to people undergoing genetic tests, writes Amy Gutman, the president of the University of Pennsylvania and the chair of the Presidential Commission for the Study of Bioethical Issues, in Science.
The commission issued a report outlining how incidental findings should be treated in clinical, research, and direct-to-consumer settings. Overall, the commission said that in any of those situations, that the clinicians, researchers, or companies should explain to potential recipients how likely incidental findings are and what the plan is for disclosing any such findings.
Additionally, the commission recommends that federal agencies and other entities continue to fund research to into incidental and secondary findings to examine what sorts of findings may arise and how common they are as well as the costs, benefits, and harms of uncovering and communicating these findings.
The commission doesn't, ScienceInsider points out, say which incidental findings should be returned to participants.
Researchers, the commission says, should follow the general recommendations to inform participants ahead of time about the likelihood of uncovering secondary findings and how those findings will be communicated. However, the commission says that researchers do not have a duty to look for them.
"While some researchers have research funding to look for secondary findings, this will not be true for many of those conducting valuable research endeavors," the report says. "Prioritizing a duty to look for secondary findings over the creation of generalizable knowledge has the potential to undermine the research enterprise."
GenomeWeb Daily News has more on this report here.