ymjЯкутский медицинский журналYakut Medical Journal1813-19052312-1017ЯНЦ КМП10.25789/YMJ.2021.75.26ymj-553Research ArticleТОЧКА ЗРЕНИЯPOINT OF VIEW«Право не знать» - этический принцип ДНК-тестирования поздноманифестирующих заболеваний"Right not to know" as an ethical principle of DNA testing for late-onset diseasesКононоваС. К.KononovaS. K.

Кононова Сардана Кононовна – к.б.н., в.н.с.-зав.лаб.

konsard@rambler.ruЯНЦ КМПРоссия20212704202503104108Copyright © Кононова С.К., 20252025Кононова С.К.Kononova S.K.This work is licensed under a Creative Commons Attribution 4.0 License.https://ymj.elpub.ru/jour/article/view/553

В статье рассматривается этический принцип «право не знать», связанный с ДНК-тестированием болезней с поздним началом развития, на материалах зарубежных публикаций. Для генетиков и врачей Республики Саха (Якутия) данная проблема будет требовать обсуждений и принятия решений, так как в популяции широко распространено наследственное поздноманифестирующее заболевание – спиноцеребеллярная атаксия I типа, ДНК-тестирование которого применяется в практической медицине республики с 2000 г. Хорея Гентингтона является наиболее исследованным по биоэтическим вопросам наследственным заболеванием. По мнению специалистов, требуется обновление рекомендуемых руководящих принципов тестирования хореи Гентингтона в контексте принципа «право не знать» объединенным комитетом генетиков, неврологов, а также экспертов по правовым и этическим вопросам.

The article examines the ethical principle - the ‘right not to know’, associated with DNA testing of diseases with late onset of development, based on the materials of foreign publications. For geneticists and doctors of the Republic of Sakha (Yakutia), this problem will require discussion and decision-making steps, since type I spinocerebellar ataxia as the hereditary late manifestation disease is widespread in the population, DNA testing of which has been used in practical medicine of the republic since the 2000s. Huntington's chorea is the most researched hereditary disease on bioethical issues. According to experts, it is necessary to update the recommended testing guidelines for Huntington's chorea in the context of the principle of ‘right not to know’ with a joint committee of geneticists, neurologists, and legal and ethical experts.

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The authors declare that there are no conflicts of interest present.