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Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland
Journal of Bioethical Inquiry ( IF 1.8 ) Pub Date : 2024-07-22 , DOI: 10.1007/s11673-024-10355-x
J Eichinger 1 , B S Elger 1, 2 , S McLennan 3 , I Filges 4, 5 , I Koné 1
Affiliation  

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.



中文翻译:


德国和瑞士医学遗传学家对非指导性的态度



非指导性原则仍然是遗传学的重要原则。然而,这个概念在过去二十年里遇到了越来越多的批评。关于它是否适合遗传学中特定情况的讨论正在进行中,特别是考虑到遗传医学最近取得的重大进展。尽管围绕非指导性存在争议,但从实际进行遗传咨询的人的角度对这一问题进行实证调查的最新国际研究明显缺乏。为了解决这一差距,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。采用反思性主题分析对二十次定性访谈进行了分析。参与者的反应揭示了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。这似乎引起了困扰,因为许多遗传学家表示,鉴于基因组测试结果产生的治疗影响的可能性越来越大,该原理很难应用于临床实践,并且不再具有伦理合理性。我们的定性实证研究提供的见解与正在进行的有关该原则的定义、合法性和可行性的理论辩论相一致。对非指导性的充分细致的理解和应用似乎对于规避该原则固有的风险至关重要,同时促进患者的自主性和仁慈。

更新日期:2024-07-22
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