Patients' views on incidental findings from clinical exome sequencing

Appl Transl Genom. 2015 Feb 21;4:38-43. doi: 10.1016/j.atg.2015.02.005. eCollection 2015 Mar.

Abstract

This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings.

Keywords: Attitude; Clinical genomics; ELSI; Incidental finding; Precision Medicine; Qualitative research; Return of results.