Правовое регулирование деятельности биобанков в России

Abstract

The article analyzes the concept and role of biobanks in carrying out genomic research and concludes that it is necessary, on the basis of an agreed conceptual apparatus, to formulate general provisions on the status of subjects with biobanks, on the regime of bio samples and information obtained on their basis. It is proposed to ensure interaction of organizations engaged in biobanking by improving the legal regime of biobanks, forming registers of genetic data and strengthening state control over their activities. The idea is substantiated that the legal regulation of biobanking in Russia should be based on the principles laid down in international acts, ethical rules and doctrine. In the article, considerations were made regarding the need to separate within the framework of the general rules of procedure for the provision of biomaterials and genetic information for scientific purposes, special attention was paid to the procedure for transboundary exchange of information.