Program in Bioethics and Humanities

Publication:  Information is Information

Petri Dishes

The public’s voice has been nearly absent in discussions on managing genomic incidental findings. This article by a team of University of Iowa researchers, including Dr. Simon of the Program of Bioethics and Humanities, reports on nine focus groups and nine interviews (n =63) with a broad cross-section of lay public groups to elucidate public viewpoints on incidental findings that could occur as a result of genome-based testing in clinical and research situations. Participants wanted incidental findings disclosed to them whether or not these were clinical or research findings. Personal utility was an important reason for disclosure, and participants believed that managing information is a shared responsibility between professionals and themselves. Broad public input is needed in order to understand and incorporate the public’s perspective on management of incidental findings as disclosure guidelines, and policies are developed in clinical and research settings. The full article text can be found here.