德国和瑞士医学遗传学家对非指导性的态度。

IF 1.8 3区 哲学 Q2 ETHICS
J Eichinger, B S Elger, S McLennan, I Filges, I Koné
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引用次数: 0

摘要

非指导性原则仍然是遗传学的一个重要信条。然而,在过去二十年中,这一概念受到了越来越多的批评。人们一直在讨论非指导性原则是否适合遗传学中的特定情况,特别是考虑到遗传医学最近取得的重大进展。尽管围绕 "非指导性 "的争论不绝于耳,但从实际从事遗传咨询工作的人的角度对这一问题进行实证调查的最新国际研究却明显不足。针对这一空白,我们的文章深入研究了德国和瑞士医学遗传学家的观点和经验。我们采用反思性主题分析法对 20 个定性访谈进行了分析。从参与者的回答中可以看出,他们对这一概念的理解和应用存在很大的不确定性和分歧。这似乎造成了困扰,因为许多遗传学家表示,这一原则很难应用于临床实践,而且鉴于基因组检测结果越来越有可能产生治疗影响,这一原则在伦理上已不再合理。我们的定性实证研究提供的见解与目前关于该原则的定义、合法性和可行性的理论辩论相吻合。充分细致地理解和应用非指导性原则似乎是规避该原则固有风险的关键,同时还能促进患者的自主性和受益性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland.

Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland.

The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. Participants' responses revealed substantial uncertainties and divergences in their understanding and application of the concept. It seems to cause distress since many geneticists stated that the principle was difficult to put into clinical practice and was no longer ethically justified given the increasing likelihood of therapeutic implications resulting from genomic testing outcomes. The insights provided by our qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.

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来源期刊
Journal of Bioethical Inquiry
Journal of Bioethical Inquiry 医学-医学:伦理
CiteScore
5.20
自引率
8.30%
发文量
67
审稿时长
>12 weeks
期刊介绍: The JBI welcomes both reports of empirical research and articles that increase theoretical understanding of medicine and health care, the health professions and the biological sciences. The JBI is also open to critical reflections on medicine and conventional bioethics, the nature of health, illness and disability, the sources of ethics, the nature of ethical communities, and possible implications of new developments in science and technology for social and cultural life and human identity. We welcome contributions from perspectives that are less commonly published in existing journals in the field and reports of empirical research studies using both qualitative and quantitative methodologies. The JBI accepts contributions from authors working in or across disciplines including – but not limited to – the following: -philosophy- bioethics- economics- social theory- law- public health and epidemiology- anthropology- psychology- feminism- gay and lesbian studies- linguistics and discourse analysis- cultural studies- disability studies- history- literature and literary studies- environmental sciences- theology and religious studies
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