STATE REGISTRY OF HUMAN GENOMIC INFORMATION IN UKRAINE: HOW TO ACHIEVE A BALANCE BETWEEN LAW, MEDICINE AND ETHICS.

Abstract

The aim: The purpose of this study is to analyze the provisions of the Law of Ukraine "On State Registration of Human Genomic Information" and to make proposals for its improvement taking into account international experience. Materials and methods: The study was conducted on the basis of the analysis of normative material, investigative and judicial practice, decisions of the ECtHR, the position of experts involved in the process of identification of deceased persons, which was expressed during the Second All-Ukrainian Forum of Forensic Experts on June 17, 2022, and a working meeting of the leadership of the KNDISE, DSU "Main Bureau of Forensic Medical Examination of the Ministry of Health of Ukraine" with a representative of the European Training Center for Identification of Victims of Natural Disasters and Forensic Examination in Central Europe (ETAF) (Germany). Conclusions: The Law of Ukraine «On the State Register of Human Genomic Information» is a progressive step towards normalizing the use of DNA analysis as an evidence tool. The detailed regulation of the types of information and subjects subject to DNA testing, taking into account the procedural status of the person, the gravity of the crime or official duties, fully complies with international standards. At the same time, the issue of legal certainty and compliance with the principle of confidentiality requires additional elaboration, since the provision of genomic information obtained in accordance with this law to the authorities of foreign states is possible only if these authorities and the relevant competent authority of Ukraine can establish such a regime of access to infor¬mation that makes it impossible disclosure of information for other purposes or its disclosure in any way, including through unauthorized access. The procedure for selecting, storing, and using genomic information and enshrining it in this law requires unification, as the extensive departmental approach creates risks for the quality of the law, improper use of information, and minimizes the guarantee of its protection.