Ethical boundaries of the legal regulation of genome sequencing in Russia and abroad.

Abstract

The relevance of the chosen topic is due to the need to resolve ethical problems that arise in the framework of legal regulation of genome-wide sequencing in Russia and foreign countries. The purpose of this research is to form ethical principles that should become a reference point for law - making in this area. In order to achieve this goal, we have solved the tasks of studying the normative legal acts of Russia and a number of foreign countries from an ethical point of view. General scientific, private scientific and special methods of scientific knowledge (system-structural, formal-legal) are used. In order to comply with the ethical boundaries of legal regulation, to store access and protect full-genome sequencing data in Russia and foreign countries, it is proposed to develop a set of restrictions that prevent possible discrimination on genetic grounds, to create the necessary conditions for the inadmissibility of disclosure of personalized data, disclosure of information about a genetic disease to the subject and his relatives, as well as the boundaries of editing the genome of a human embryo. For the first time, the authors substantiate the need to establish clear ethical boundaries in the implementation of genome-wide sequencing in Russia based on foreign experience.