On 29 June 2022, a panel on “Genetics and Law: The Challenges of 2020-2030”, moderated by Member of the Presidium of the Russian Association for the Promotion of Science Maria Vorontsova, took place as part of the 10th St. Petersburg International Legal Forum. BGP Litigation Partner and Head of Life Sciences & Technology Alexander Panov took part in the discussion.
The panelists – Minister of Science and Higher Education of Russia, Deputy Head of the Federal Service for Surveillance on Consumer Rights Protection (Rospotrebnadzor), the representatives of the scientific community, public authorities, and major companies – discussed the issues of preservation, research, and practical use of bioresource collections, noting the importance of this work in enabling fundamental studies in various areas and industrial sectors. The panelists observed that the creation and preservation of unique genetic diversity of bioresource collections and biobanks will be possible provided that the legal regulation of the activities of bioresource centres is improved.
Alexander Panov opined that it is necessary to separate the laws on biobanks and genetic data. He illustrated this with the example of the data of full genome sequencing with so-called simple genetic data, showing that some data will fall under Law 152-FZ on Personal Data, while other data will be regulated by general laws on information, in particular, by Law 149-FZ on Information, Information Technologies and the Protection of Information. Furthermore, it is important to provide for the rights of donors and for opportunities for personalised medicine, and strike a balance between the interests of patients and the public health of the nation. These and other objectives warrant the suggestion that the regulation genetic repositories and biobanks is a separate offshoot of the laws.
Alexander noted separately the importance of local ethics committees in resolving bioethical issues and the issues of applied ethics, in particular, their role in making decisions on access to genetic information during research and medical treatment.
Watch the recorded panel here.