Abstract
Introduction: the article deals with some basic legal issues that arise from the use of human genetic information. There exist some issues of defining the legal nature of such information, which we identify in the article. Current legal regulation is not able to take into account the peculiarities of genetic information and provide an effective protection against the misappropriation and improper use of genetic information when carrying out genetic diagnostics, working with biomaterials. At the moment, special public law and civil law regulation of the procedure for obtaining, accumulating, processing, accessing, and protecting genetic information is required. Purpose: to develop a conception of the legal nature of genetic information, to identify the issues in the field of civil rights protection when using genetic information, to propose possible ways of resolving those, which is done in the article based on the analysis of scientific works as well as international and Russian legislation. Methods: empirical methods of comparison, description, interpretation; theoretical methods of formal and dialectical logic. Specific scientific methods: legal-dogmatic method and the method of interpretation of legal norms. Results: in order to overcome the issues associated with the use of genetic information, it is necessary to develop an effective system of legal guarantees aimed at ensuring respect for human dignity, protecting rights and interests of an individual, protecting their genetic information in order to prevent possible harm from its improper use. Conclusion: in order to prevent the threat of illegal use of genetic information and violation of human rights, the government must take a number of important measures and introduce amendments and supplements into the statutory regulations: genetic information of an individual must acquire a special legal status, namely, it must be set apart from the group of personal biometric information and form an independent type of personal data with restricted access based on the kinship (blood) relationship between third parties and the carrier of such information; it is important to bring the provisions of civil legislation into line with the Law on Personal Data; it is necessary to legislatively specify the regime of the use and preservation of genetic information obtained as a result of gene diagnostics and to provide the legal framework for the activities of biobanks. Such amendments and supplements would make it possible to form a unified system of ways of genetic information protection as a right in combination with the norms on the protection of private life.
Highlights
The modern society is facing the fact that the importance of genetic information in human DNA is growing in various spheres of life, mainly, in the sphere of genetic engineering and genomic technologies, where the existing methods of studying the human genome are continuously modernized
In order to prevent the threat of improper use of genetic information and violation of civil rights, the state must take a number of important measures to modernize the existing regulatory framework that does not correspond to the modern realities in the context of the rapid development of genetic technologies
A special legal status must be given to person’s genetic information. It must be separated from the group of personal biometric information into an independent type of personal data with limited access based on the kinship relationship of third parties with the carrier of such information
Summary
The modern society is facing the fact that the importance of genetic information in human DNA is growing in various spheres of life, mainly, in the sphere of genetic engineering and genomic technologies, where the existing methods of studying the human genome are continuously modernized. Данная Конвенция в настоящее время имеет несколько дополняющих ее положения протоколов в отношении процедур клонирования (установлен категорический запрет на ее проведение), трансплантации и проведения исследований в области биомедицины The identified issues are directly related to the problem of defining the legal nature and, to the establishment of a special legal regime for the use of genetic information that would ensure its proper protection and would not allow violation of human rights In this regard, it seems important to discuss the features of legal regulation of the use of genetic information obtained from an individual both at the international level, in some EU countries, and in Russian legislation, to identify the corresponding gaps and shortcomings in the existing regime and offer possible solutions. The provisions of the Declaration emphasize the importance of the impact of science and technology on future generations, including their genetic characteristics, and they determine the priority of direct and indirect benefits of participants in medical and other research, using technologies and the minimization of any harm that could be possibly done to their health[4]
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