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二级变异和偶然发现披露讨论中临床遗传学家的伦理路标

Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.

作者信息

Christenhusz Gabrielle M, Devriendt Koenraad, Van Esch Hilde, Dierickx Kris

机构信息

Centre for Biomedical Ethics and Law, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium,

出版信息

Med Health Care Philos. 2015 Aug;18(3):361-70. doi: 10.1007/s11019-014-9611-8.

Abstract

While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician's expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts.

摘要

尽管在临床遗传学背景下,对所谓的次要变异和偶然发现的伦理及实证兴趣日益浓厚,但迄今为止,对于所提出的各种建议的伦理基础,仍缺乏批判性反思。我们审视并批判了三种最突出的披露立场的伦理依据:简而言之,分别是临床遗传学家决定、共同决定以及患者决定。随后,我们并非立即提出一种新的披露选项,而是借鉴规范性和实证性伦理文献,探索相关的基础伦理价值和规范。由此,我们确立了四个伦理路标,以帮助指导披露讨论。它们分别是:尊重分享临床医生的专业知识;进行透明沟通;认识上保持谦逊;以及尊重患者的内在本质。最后,我们根据这四个伦理路标,考量了当前最常见的披露立场。

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