International and National Legal Approaches to the Protection of Genetic Information

Abstract

The purpose of this article is to present an analysis of the main approaches to the problem of protecting genetic information at the international and national levels. The author presented an overview of international acts on genetic information protection, as well as an overview of the positions of the ECtHR on the issue under consideration, author also conducted a comparative analysis of national approaches to the legal regulation of this area on the example of different countries (USA, France, Israel, Russia). There are two main forms of genetic data protection. The first is the protection of genetic data through medical data, biometric data, personal data in general, through the right to privacy. The second is the protection of genetic data through specialized rules on the confidentiality of genetic information. It is concluded that at the international level the protection of genetic information is carried out more effectively by general human rights protection treaties (in particular, the ECHR) through a broad interpretation of the right to privacy and some other rights. The Universal Declaration on the Human Genome and Human Rights of 1997 and the International Declaration on Human Genetic Data of 2003 do not ensure the execution of their provisions and do not establish a control mechanism due to their recommendatory nature, but perform an important "guiding" function. They reveal possible methods of regulation and protection of genetic data by states, establish standards, following which states can effectively organize legal regulation in this area. At the national level establishment of special legal norms for genetic data seems to be appropriate and more effective, because allow to refer directly on the violation of the regimes for the use of genetic data in the courts. In this case, there is no need to prove genetic information as biometric, also unlike the legal regimes where genetic information protects through the rules on medical secrecy, a situation of medical treatment is not necessary.