Patients' views on incidental findings from clinical exome sequencing

被引：72

作者：

Clift, Kristin E. ^{[1
]}

Halverson, Colin M. E. ^{[1
,2
]}

Fiksdal, Alexander S. ^{[1
]}

Kumbamu, Ashok ^{[1
]}

Sharp, Richard R. ^{[1
,3
,4
]}

McCormick, Jennifer B. ^{[1
,3
,4
]}

机构：

[1] Mayo Clin, Biomed Eth Program, Rochester, MN USA

[2] Univ Chicago, Dept Anthropol, Chicago, IL 60637 USA

[3] Div Hlth Care Res & Policy, London, England

[4] Div Gen Internal Med, Zurich, Switzerland

来源：

APPLIED AND TRANSLATIONAL GENOMICS | 2015年 / 4卷

关键词：

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

D O I：

10.1016/j.atg.2015.02.005

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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. (C) 2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

引用

页码：38 / 43

页数：6

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