UBC Neurology Prof. Judy Illes is among 25 international leading researchers recommending the handling of incidental findings in genomic research in a paper published online today in the journal Genetics in Medicine.
The special article, authored by experts from the University of Minnesota, Johns Hopkins, Duke, Stanford and McGill Universities, Harvard Medical School and UBC, propose that biobanks, where genetic samples and research data are collected and archived, should shoulder significant responsibility for managing the individual research results and incidental findings that arise.
Incidental findings (IFs) are previously undiagnosed medical or psychiatric conditions that are discovered unintentionally during research using large numbers of genetic samples or data. IFs are occurring more frequently with the increase of samples being collected and archived, and research projects analyzing them. Whether to offer these incidental findings back to genomic sample contributors has been the subject of discussion and debate. The recommendations published today result from a two-year project funded by the U.S. National Institutes of Health.
“This multidisciplinary, international initiative will have a global impact on existing biobanks and those on the horizon,” says Illes, Canada Research Chair in Neuroethics. “The culmination of this work is an example of positive and empowered thinking that leads to constructive guidance for ethically-challenging concerns, such as those surrounding incidental findings and return of results, in human health research.”
The article makes 10 concrete recommendations, covering both new and existing biobanks, on how biobanks can play the crucial role of offering consenting contributors valid findings that reveal established and substantial risks of serious health conditions, and that are clinically actionable.
The article is available at http://www.nature.com/gim/.