title: Patients' views on incidental findings from clinical exome sequencing.
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.
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA.
authors.forename: Kristin E
authors.initials: KE
authors.lastname: Clift
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA; University of Chicago, Department of Anthropology, Chicago, IL, USA.
authors.forename: Colin M E
authors.initials: CM
authors.lastname: Halverson
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA.
authors.forename: Alexander S
authors.initials: AS
authors.lastname: Fiksdal
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA.
authors.forename: Ashok
authors.initials: A
authors.lastname: Kumbamu
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA; Division of Health Care Research and Policy; Division of General Internal Medicine.
authors.forename: Richard R
authors.initials: RR
authors.lastname: Sharp
authors.affiliation: Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA; Division of Health Care Research and Policy; Division of General Internal Medicine.
authors.forename: Jennifer B
authors.initials: JB
authors.lastname: McCormick
keywords: Attitude; Clinical genomics; ELSI; Incidental finding; Precision Medicine; Qualitative research; Return of results