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《不敢言说的导向性:波兰临床遗传学家对不偏倚原则的看法和态度》

The Directiveness that Dare Not Speak Its Name. Views and Attitudes of Polish Clinical Geneticists toward the Nondirectiveness Principle.

机构信息

Department of Philosophy and Bioethics, Jagiellonian University Medical College, Michałowskiego 12, 31-126, Kraków, Poland.

Faculty of Psychology and Law in Poznań, SWPS University of Social Sciences and Humanities, Kutrzeby 10, 61-719, Poznań, Poland.

出版信息

J Bioeth Inq. 2022 Dec;19(4):557-569. doi: 10.1007/s11673-022-10202-x. Epub 2022 Sep 1.

Abstract

Nondirectiveness is widely regarded as an important principle of genetic counseling. However, numerous studies have indicated that the use of this principle and its content itself are subject to controversies. The present study aimed to verify how the nondirectiveness principle is defined by Polish geneticists, the extent to which it is considered the main principle in clinical practice, and the situations in which geneticists see the positive value of the directive action. Using quantitative and qualitative methods, the study compared the abstract declarations of the directiveness validity and the scope of this principle with the declaration of action in situations close to reality (case scenarios). The results showed that the high rank assigned to the nondirectiveness principle does not translate into the conviction about the absolute obligation to use it in clinical practice. Polish geneticists are inclined to restrict the scope of patients' choices when these are outside of their definition of medical standard. Strong medical paternalism manifests itself particularly in invasive prenatal diagnostics, where geneticists play the role of gatekeepers. In this study, we offer hypotheses about the sources of these attitudes by analyzing the current cultural and legal context of Poland.

摘要

非指导原则被广泛认为是遗传咨询的重要原则。然而,许多研究表明,该原则的使用及其内容本身存在争议。本研究旨在验证波兰遗传学家如何定义非指导原则,该原则在临床实践中被认为是主要原则的程度,以及遗传学家在何种情况下认为指令行动具有积极价值。本研究采用定量和定性方法,将直接有效性和该原则范围的抽象声明与接近现实情况(案例情景)下的行动声明进行了比较。结果表明,对非指导原则的高度评价并未转化为在临床实践中绝对有义务使用该原则的信念。波兰遗传学家倾向于限制患者选择的范围,当这些选择超出他们对医疗标准的定义时。强烈的医学家长主义在侵入性产前诊断中表现得尤为明显,遗传学家在其中扮演着把关人的角色。在这项研究中,我们通过分析波兰当前的文化和法律背景,对这些态度的来源提出了假设。

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本文引用的文献

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