The Civil Law Regime of Genetic Information in the Context of Bioethics

Abstract

The main purpose of this article is to review the legal aspects governing genetic testing and the processing of genetic test results in several countries and to point out similarities and differences. The article discusses the reasons for creating a unified standard to ensure protection, storage, transmission, processing, and analysis of genetic data. In modern Russian conditions, the issues of information leakage from such institutions, which take place in foreign countries, are not yet relevant. This is largely due to the fact that legal regulation of relevant social relations in Russia is just beginning to emerge, so there is every reason to believe that such problems will arise and will require a solution. The methodological basis of the study consists of empirical methods of comparison and description, as well as the private-scientific method of comparative law —- comparative analysis of the legislation of the Russian Federation, France, the United States of America and the People’s Republic of China. The analysis examines and analyzes controversial aspects of the regulation of this issue at the level of national legislation and proposes amendments to the Federal Law “On Personal Data” taking into account global trends. Genetic testing has become part of the diagnosis of an increasing number of medical conditions, while genetic testing methods have entered the era of high throughput, allowing both diagnostics and medical research to address many complex issues. Genetic testing, outside of the public health system, has become important in addressing a multitude of issues, yet legislation on genetic testing in many countries lags behind. The author concludes that in this context, a broad discussion and subsequent adoption of a law “On Cybersecurity” in the Russian Federation is necessary, some of whose conceptual provisions can be adopted by the national legal system to improve the current legislation on the protection of genetic information.