患者对临床外显子组测序偶然发现结果的看法。
Patients' views on incidental findings from clinical exome sequencing.
作者信息
Clift Kristin E, Halverson Colin M E, Fiksdal Alexander S, Kumbamu Ashok, Sharp Richard R, McCormick Jennifer B
机构信息
Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA.
Mayo Clinic, Biomedical Ethics Program, Rochester, MN, USA; University of Chicago, Department of Anthropology, Chicago, IL, USA.
出版信息
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.
摘要
本文描述了接受基于临床基因组检测的患者及其家庭成员对于这些检测偶然发现结果反馈的看法。在十六个月的时间里，我们对个人进行了55次深度访谈，以探讨他们对于希望反馈给他们的结果类型的偏好。回答表明对于偶然发现结果的反馈存在多种态度，以及对这些态度的多种理由。大多数参与者还表示，必须让患者参与决定反馈哪些结果，而不是采用通用的、预先确定的结果披露规则。结果表明了以患者为中心的方法对于反馈偶然发现结果的重要性。
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