A Framework to Ethically Approach Incidental Findings in Genetic Research

Abstract

With the advancement of science in the area of genetics and genomics, special ethical considerations should be taken in addition to the general ethical framework followed in research. Genetic research can reveal information about the susceptibility of an individual to disease and hence about his/her future health. Such information may be of interest and benefit to research participants, especially if preventive strategies exist. It may also expose them to other risks or anxieties when incidental findings that were not the primary scope of the study are found. Ethical guidelines acknowledge the duty of researchers to disclose incidental findings (IFs) to participants. In this review, we recommend four steps approach that researchers can use to disclose incidental findings: plan for IFs, discuss IFs in informed consent, identify and disclose IFs. Verification and identification of IFs should follow a categorical stratification based on the importance of the findings and the presence of a beneficial intervention to the participants.

Keywords: genetic research; genomics; incidental findings; research ethics; unsolicited findings.

Figure 1

A framework to ethically address incidental findings in genetic research