Should genetic findings from genome research be reported back to the participants?

Abstract

Background: Today, new and powerful sequencing technology is being used in biomedical research. In parallel, an intense ethical debate has arisen regarding the handling of the information which is generated through such comprehensive analyses. The conflict concerns whether any findings made during research, intended or incidental, should be reported back to the individual research participant. KNOWLEDGE BASIS: We reviewed international academic literature that has addressed the issue of feedback from genetic studies. The arguments in favour and against providing individual information from genome research to research participants were reviewed. Key arguments in this debate are presented and commented on.

Results: A growing number of voices argue in favour of return of research-generated genetic information with reference to key values such as autonomy, respect, charity, mutuality and reciprocity. The counter-arguments are not as easily accessible, but concern the fundamental distinction between research and treatment, which indicates that researchers are not obliged to provide individual information to participants. Partly, the counter-arguments focus on the possible unfortunate consequences that such feedback may have for individuals, research and society as a whole.

Interpretation: We are standing at a crossroads with regard to assessing whether returning research-generated genetic risk information at the individual level is a moral imperative. Here, individually based research ethics run up against concerns of social medicine and research-based obligations. The right balance has probably not yet been found.