Abstract
The paper contains a comparative analysis of legal instruments used in the Russian legislation and in the legislation of other countries (Germany, Great Britain, USA, Japan) to protect (prevent violations, restore) human rights violated during the study of human genome. It was concluded that the existence of a comprehensive system of legal means for the protection and restoration of human rights violated during the study of human genome, is an incentive for the development of genomic research. In this regard, in Russia it is necessary to amend civil acts, Information, Criminal and Administrative Law in order to establish the peculiarities of the compensation for harm to human rights violations when studying human genome, special (different from the general) procedure for obtaining voluntary informed consent for genomic research, as well as special offences and administrative offenses committed during the study of the human genome.
Highlights
The system of legal instruments used in Russian and foreign legislation (Europe, Japan, USA) to protect and restore human rights violated during the study of human genome was studied within the framework of the scientific project No 18-29-14021 “Development of an integrated and socially effective system of legal means, ensuring the effective protection and restoration of the rights and interests of natural persons, disturbed in connection with the study of their genome, the genome of others, and as a result of unauthorized use of the results of these studies” funded by the Russian Foundation for Basic Research
Despite the fact that in most foreign countries human genome research is regulated by law on the basis of the precautionary principle and maximum non-harm to humans [3], the main incentives for researchers to comply with all established requirements include a clear regulation of the grounds and limits of their responsibility for violation of certain human rights in the study of human genome
The instruments used to prevent the violation of human rights in genomic studies include the instruments of information law in the field of human genome research, which are used primarily to prevent the violation of human rights: informed voluntary consent to conduct research, establishing information with restricted access in relation to information obtained from human genome research
Summary
1.1 Research carried out in the study of legal instruments for the protection of human rights in the study of genome. In genomic studies the potential subject to violations may be fundamental human rights enshrined in the Universal Declaration of Human Rights adopted on December 10, 1948, and detailed in the Universal Declaration on the Human Genome and Human Rights of 11.11.1997 at the 29th session of the UNESCO General Conference These rights include the following: 1) the right to liberty and physical integrity: no one can be subjected to medical, scientific or other experiments without voluntary consent; 2) the right to personal dignity: everyone has the right to respect for his dignity and his rights, regardless of his genetic characteristics; 3) the right to privacy, personal and family secrets, including the prohibition of collecting, storing, using and. The results of comparative studies made it possible to conclude which set of tools is optimal (both for Russia and for other countries) in order to ensure a balance between stimulating human genome research and ensuring fundamental human and citizen rights
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