Modern science has achieved very significant results in different areas. For ordinary people, it is gratifying that such achievements help to treat complex diseases, and the technologies themselves now reduce the cost of treatment unlike the most other factors affecting the medicine. One of these areas of scientific knowledge is genetic engineering that can change only separate parts of the human body or influence the transformation of the human body in general. This raises ethical issues that provoke a large number of disputes in the society. To overcome them, there is a need for a clear conceptual understanding of the problems associated with the diagnosis and editing of the human genome, on the basis of which an effective normative legal framework that will satisfy the interests of all participants of these legal relations should be developed.
A secular trend of the development of medicine in the 20th century was on the ways of strengthening the foundations of public health, formation of systems of affordable medical care. Human genome deciphering opens wide prospects for using the obtained data in medicine. In recent years commercial medical organizations have been developing genetic research and personal genomic testing services. The paper is devoted to the analysis of the importance of legal self-regulation in the field of genomic counseling in the Russian Federation. The authors investigate the prospects of the introduction of personalized medicine and limitations that arise today in one of the areas of the approach under consideration, namely: forecasting predisposition to diseases of mixed nature, which is related to the peculiarities of development of medical and demographic situation in the world. The question is raised about the need for broad population studies to verify the risk values for diseases with low genetic determinacy. The authors conclude that it is impossible to predict what medicine of the future will be, but the results of genome decryption and increasing availability of personal data represent a unique social phenomenon that should be developed within the legal framework. In the coming years, the debate on the role of legal mechanisms in the self-regulation of genetic research and genetic services will become increasingly important. At the international level, this discussion will be focused on the fundamental issue of respect for individual rights in the interpretation of the data received. As genetic advice evolves, the issue of responsibility for the information provided and the availability of national regulatory mechanisms within the framework of state regulation or self-regulated professional associations will become a key concern.
Становление правового статуса прикладных геномных исследований через формирование саморегулируемых профессиональных ассоциаций 1 Аннотация. Рассмотрены наиболее обсуждаемые направления использования индивидуальных геномных данных. Отмечено возрастание объема исследований по расшифровке индивидуального генома и использования геномных данных в области вспомогательных репродуктивных технологий. Отмечается, что в Российской Федерации обсуждаются развитие этических принципов, разработка национальных этических требований, формирование этического кодекса. Ставится вопрос о механизмах внедрения принципов саморегулирования. Возможным ключом к решению этого вопроса является создание саморегулируемых профессиональных ассоциаций, а также совершенствование законодательной базы Российской Федерации в этой сфере. Ключевые слова: индивидуальные геномные данные; саморегулирование; саморегулируемые профессиональные ассоциации; ассоциации; генетическое тестирование; тестирование. Для цитирования: Машкова К. В., Широков А. Ю. Становление правового статуса прикладных геномных исследований через формирование саморегулируемых профессиональных ассоциаций // Актуальные проблемы российского права.
Genomic research are currently of key importance in the development of medicine. In order to carry out such activities, it is necessary not only to generate new genetic objects, but also to accumulate samples in the form of various biomaterials. Such collections in recent years are the pride of large biobanks, which spend the maximum amount of effort to save samples for subsequent research or application in practice. However, the functioning of biobanks has another side of the coin: the accumulation of certain information entails an increased level of responsibility for the collected data. In modern Russian conditions, the issues of information leakage from such institutions taking place in foreign countries are still irrelevant. In many ways, the reason for this is only the beginning of the normative legal regulation of the relevant social relations, which are only beginning to appear on the territory of our state. Therefore, there is every reason to believe that such problems will arise and it is important to solve them. Some proposals for such activities are set out in this paper.
Феномены, с которыми мы имеем дело,-это всегда транскрипты реальных событий в их реальной последовательности.-Харви Сакс, «Лекции о Разговоре»
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