Legal regulation registration of human genomic information: international and domestic experience

Abstract

The article analyzes the main regulatory and legal documents that regulate the issue of legal regulation of the state registration of human genomic information in Ukraine. It has been established that the functioning of the database of human genomic information in Ukraine is currently regulated by the Instruction on the Organization of the Operation of Forensic Records of the Expert Service of the Ministry of Internal Affairs, approved by the Order of the Ministry of Internal Affairs of Ukraine dated September 10, 2009 No. 390. However, the sources of the formation of records of genetic characteristics defined by this Instruction do not provide an opportunity to effectively use the tool of the database data for the identification of missing persons, etc., since it is possible to ensure the effectiveness of the method of molecular genetic research only in combination with the maintenance of an automated DNA database.
 The relevance of the adoption of the Law of Ukraine "On State Registration of Human Genomic Information" is substantiated, which defines the legal principles of processing and state registration of human genomic information in Ukraine. Its main purpose and specifics of application are clarified, and the problems in terms of legal uncertainty regarding its compliance with international standards of human rights compliance are identified. The issues related to the technical protection of the Electronic Register of Information on Human Genetic Traits, which is a functional subsystem of the unified information system of the Ministry of Internal Affairs, are outlined, and suggestions for improving this area are provided. Attention is focused on the relevance of international cooperation regarding the exchange of genomic information with other countries and international organizations.
 The role of the International Committee of the Red Cross was clarified, the statistics of identification of missing persons by this organization were analyzed. Attention was drawn to the role of the International Commission on Missing Persons, which has considerable experience in this field. Analyzed: positive international experience of registering human genomic information of Great Britain, USA, Thailand, Brazil; The Prüm Treaty on providing Member States of the European Union with automatic access to genetic databases, fingerprints and information on crimes related to drug trafficking.
 It was concluded that the realities of the times necessitate the introduction and use of advanced technologies that have existed in the field of human genomic identification for more than three decades - DNA molecular genetic research and a data bank of human genetic features, which will contribute to the prompt solution of socially significant tasks.