Protection of Genetic Data in Genetic Testing and Gene-Therapy Treatment: IT Law Aspects

Rassolov, Ilya M.; Chubukova, S. G.

doi:10.17803/1994-1471.2020.114.5.065-072

Cited by 3 publications

(1 citation statement)

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“…Изучением этой темы в доктрине и практике цивилисты занимаются постоянно 2 , вместе с тем ученые разных стран обращают внимание на неопределенность понятия «геном человека», которое используется в международных правовых актах как в значении «видовой общий для всех людей геном», так и в смысле «уникальный для отдельного человека геном» [3]. Нет определенности в этой части и в отечественной доктрине [4, с.…”

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Actual Problems of Domestic Legal Regulation of the Collection, Storage and Transmission of Genomic Information in the Context of Modern Challenges

Балашов¹,

Kravchenko

2023

jour

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Relevance. The implementation of the international project "Human Genome" made it possible to decipher it, however, the volume of this information and possibilities of its application both for universal (pandemic control) and terrorist purposes (development of biological weapons, targeted at a particular nation), especially in conditions of political tension and competition for leadership, determine the need to forecast potential risks and develop an adequate legal regulation.The purpose of this study is to assess the current state of security of genomic information obtained in the framework of biomedical research, as well as within the framework of implementation of public policy in the sphere of public security. It is also necessary to study the experience of foreign countries in this field with a view to its further use in Russian legal practice.Objectives. Comprehensive study of legal regulation of the collection, storage, use and destruction of genomic information allowed to identify gaps in legal regulation. Finding ways to solve them is the objective of this study.Methodology. To achieve the set objective were applied methods of scientific knowledge: analysis, synthesis, system-analytical, formal-logical, system-legal methods by means of which the authors carried out an analytical review of domestic and foreign legislation, identified the specifics of legal relations under study and proposed solutions to the identified legal problems.Results of the study are formulated suggestions for changes in legal acts of domestic legislation relating to the collection, storage and control of access to genomic information, taking into account the studied foreign experience. Conclusion. The existing regulations on genomic information do not provide protection from processing and transfer to third parties. For this reason human genomic data should be designated as "sui generis", and legal regulation should be expanded, including formation of federal agencies responsible for regulation of ethical and legal aspects of genetic and genomic research.

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Actual Problems of Domestic Legal Regulation of the Collection, Storage and Transmission of Genomic Information in the Context of Modern Challenges

Балашов¹,

Kravchenko

2023

jour

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Application of Genomic Data for Consumer Procedures in Banking

Alekseeva,

Mikheeva,

Ponomareva

et al. 2024

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The use of genomic information in banking – in particular, when issuing consumer loans and identifying clients – determines areas for the development of legal regulation of the application of genomic information. The establishment of the legal regime for genomic information is important due to the need to designate responsible persons for ensuring the safety of such information. In order to avoid disputable situations, as well as to protect the interests of banking customers, the present work advocates the introduction of certain amendments to the Federal Law ‘On Personal Data’ of the Russian Federation (2006). According to the proposed amendments, genomic (genetic) information should be classified as personal data. It therefore becomes necessary to increase the responsibility of the recipient of such information, as well as to establish rules for the restoration of a violated right. A suitable package of measures aimed at the banking sector will create an effective mechanism for protecting the genomic information of customers provided to a credit institution for the purposes of receiving banking or other services

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About some issues of legal regulation of the status of participants involved in genomic research

Alimov

2022

Медицинская Этика

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Continuous development of social relations implies the need in constant improvement of primarily legislative regulation so that it could adapt to the current realities in the society and country. This assumption is true both with regard to the legal regulation of the status given to participants of genomic research, as this relatively new area of social relations embraces both public, and private interests. In this respect, legal regulation should consider certain principles such as the balance of public and private interests, protection of human rights and freedoms, protection of sensitive data by the law, protection of the national interests, etc. Nevertheless, normative legal regulation of the status of genomic research participants in the Russian Federation is not complex in nature yet. Thus, it fails to result in development of this area of social relations and ensuring the rights, freedoms and legitimate interests of the mentioned persons. It is necessary to settle the issue about the boundaries of the allowed behavior, rights, obligations, guarantees and liability of genetic research participants. It seems to be appropriate to develop a complex federal law about the legal status of genetic research participants in the Russian Federation. A general approach to arranging complex legal regulation in this field consists in systematization of the existing legal regulation considering legislative regulatory activity of the discovered issues in the field of using genetic technologies and conducting genome research. During the regulatory control, it is necessary to reflect common moral and ethical principles and standards of medical and genetic research.

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Protection of Genetic Data in Genetic Testing and Gene-Therapy Treatment: IT Law Aspects

Cited by 3 publications

References 1 publication

Actual Problems of Domestic Legal Regulation of the Collection, Storage and Transmission of Genomic Information in the Context of Modern Challenges

Actual Problems of Domestic Legal Regulation of the Collection, Storage and Transmission of Genomic Information in the Context of Modern Challenges

Application of Genomic Data for Consumer Procedures in Banking

About some issues of legal regulation of the status of participants involved in genomic research

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