Biobanking as a basis for disability prevention in the Russian Federation: problems of legal confirmation

The disability of Russian citizens occupies a significant share among the overall incidence, and disability of children has been steadily increasing for the last 5 years. Biobanking is an institution for the preservation and exchange of citizens' biosamples, which may allow the identification of causes and predispositions to disabling diseases. Today the state conducts mandatory bioscreening for three disabling diseases. Establishing biobanks for the remaining disabling diseases is hampered by the cost of the issue, the time required to collect such data, and the lack of priority in this issue. In addition, there are no data in the open press on patients' biomaterials biobanking for the three types of the above-mentioned diseases, which makes it necessary for the prosecutor's office and the Ministry of Science and Higher Education of the Russian Federation to control the spending of the relevant budgetary funds. In order to increase the availability of voluntary biobanking for patients with disabling diseases, we propose to introduce relevant information into the regulations for public information through the Unified Portal of State and Municipal Services (Functions). We also highlighted the problem of a significant share of foreign components in the infrastructure of biobanks, which, in our opinion, can easily be eliminated through the conclusion of special investment contracts for the creation of appropriate production facilities between the Government of the Russian Federation and specific Russian entrepreneurs.