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

Autor: Eichinger J; Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. Johanna.eichinger@unibas.ch., Elger BS; Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.; Center for legal medicine (CURML), University of Geneva, Rue Michel-Servet 1, 1211, 4, Geneva, Switzerland., McLennan S; Institute of History and Ethics in Medicine, TUM School of Medicine, Technical University of Munich, Ismaninger Straße 22, 81675, Munich, Germany., Filges I; Medical Genetics, Institute of Medical Genetics and Pathology, University Hospital Basel and University of Basel, Schönbeinstrasse 40, 4056, Basel, Switzerland.; Department of Clinical Research, University Hospital Basel and University of Basel, c/o Universitätsspital Basel, Spitalstrasse 8/12, 4031, Basel, Switzerland., Koné I; Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
Jazyk: angličtina
Zdroj: Journal of bioethical inquiry [J Bioeth Inq] 2024 Jul 22. Date of Electronic Publication: 2024 Jul 22.
DOI: 10.1007/s11673-024-10355-x
Abstrakt: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE