Ethical rules for incidental data released

MINNEAPOLIS, July 1 (UPI) -- U.S. and Canadian scientists say they've created guidelines for informing study participants about personal information discovered during research studies.

The experts define an "incidental finding" as potentially important information about a research participant but beyond the aims of the study. The scientists say IFs are becoming increasingly common, yet no consensus has emerged to guide decisions about informing research participants of those findings.

University of Minnesota Professor Susan Wolf led a two-year project, funded by the National Human Genome Research Institute, that involved a multidisciplinary group of leading experts. That research resulted in the publication of a 17-article symposium, including a consensus paper with ethical guidelines.

The guidelines recommend disclosing IFs about conditions likely to be life-threatening. However, the guidelines recommend researchers not disclose IFs that are unlikely to benefit the participant or whose net benefit cannot be determined, reasoning such disclosures are likely to be more burdensome than beneficial to participants.

"Handling IFs responsibly requires clarity about the difference between research and clinical care," Wolf said.

The consensus paper appears in the Journal of Law, Medicine & Ethics.