LEGAL REGULATION OF GENETIC RESEARCHES IN THE RUSSIAN LEGISLATION IN THE CONTEXT OF THE PROBLEM OF GENDER VERIFICATION IN SPORT

N. Istomin, Suvorova E.I. Suvorova, S. Zenin
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Abstract

Modern achievements of geneticists, which have made it possible to map the genes of inherited diseases, have set the legislator a rather difficult task to determine the grounds and limits of the use of relevant information in various spheres of public life, including insurance. At the same time, in some countries, the emphasis is on legislative regulation, which in the case of a Federal structure of the state can be carried out at different levels (USA, Canada), in others, more importance is attached to self-regulation (great Britain, Australia). The range of issues covered by the regulation is very diverse in both cases and may include: assessment of the possibility of referral for genetic research, which is usually excluded, access to existing results of genetic research, which may be restricted by a ban on their use; the right to collect genetic information without conducting genetic testing, which is recognized by the actual practice of analyzing family history; determining the conditions and limits for the use of genetic information, which are usually associated with obtaining the consent of the policyholder, ensuring the confidentiality of personal data and only for the purposes for which it was collected; establishing a correlation between the exercise of the right to access genetic data and the amount of insurance coverage, which may decrease if favorable data is obtained that contradicts the conclusions made on the basis of family history
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体育性别鉴定问题背景下俄罗斯立法中基因研究的法律规制
遗传学家的现代成就使绘制遗传疾病的基因图谱成为可能,这给立法者提出了一项相当困难的任务,即确定在包括保险在内的公共生活各个领域使用相关信息的理由和限制。与此同时,在一些国家,重点是立法监管,在联邦国家结构的情况下,立法监管可以在不同层次上进行(美国,加拿大),在其他国家,更重视自我监管(英国,澳大利亚)。在这两种情况下,条例所涵盖的问题范围非常不同,可能包括:评估转介进行遗传研究的可能性,这通常被排除在外;获得遗传研究的现有结果,这可能因禁止使用而受到限制;在不进行基因检测的情况下收集遗传信息的权利,这为分析家族史的实际实践所认可;确定遗传信息使用的条件和限制,这通常与获得保单持有人的同意有关,确保个人数据的机密性,并仅用于收集这些信息的目的;在行使获取遗传数据的权利与保险覆盖范围之间建立关联,如果获得与基于家族史得出的结论相矛盾的有利数据,保险覆盖范围可能会减少
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