Perm University Herald. Juridical Sciences. 2021. Issue 2 (52)

Title: ISSUES OF CIVIL LAW REGULATION REGARDING THE PROTECTION OF CIVIL RIGHTS WHEN USING GENETIC INFORMATION IN THE RUSSIAN FEDERATION
Authors:

E. M. Tuzhilova-Ordanskaya, Bashkir State University

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ORCID: 0000-0001-5529-7946 ResearcherID: Н-3662-2016
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E. V. Akhtyamova, Bashkir State University

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ORCID: 0000-0002-7454-5041 ResearcherID: ААК-5547-2021
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Requisites: Tuzhilova-Ordanskaya E. M., Akhtyamova E. V. Problemy grazhdansko-pravovogo regulirovaniya v sfere zashhity prav grazhdanina v Rossiykoy Federatsii pri ispol'zovanii geneticheskoy informatsii [Issues of Civil Law Regulation Regarding the Protection of Civil Rights When Using Genetic Information]. Vestnik Permskogo universiteta. Juridicheskie nauki – Perm University Herald. Juridical Sciences. 2021. Issue 52. Pp. 263–284. (In Russ.). DOI: 10.17072/1995-4190-2021-52-263-284
DOI: 10.17072/1995-4190-2021-52-263-284
Annotation:

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.

Keywords: genetic information; personal data; intangible benefit; human genome; genetic research; DNA diagnostics; genetic examination; human rights and freedoms; genetic certification; international standards
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Received: 15.12.2020
Financing:

Acknowledgments: The reported study was funded by the Russian Foundation for Basic Research (RFBR), project number 20-111-50449

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ISSN 1995-4190 ISSN (eng.) 2618-8104
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DOI 10.17072/1995-4190
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