Запрет на дискриминацию по генетическому признаку: опыт США и России

Эмиль Ваизович Алимов

Authors

Emil V. Alimov Institute of Legislation and Comparative Law under the Government of the Russian Federation, 34 Bolshaya Cheryomushkinskaya Street, Moscow 117218, Russia https://orcid.org/0000-0002-0743-4210

Keywords:

genetic discrimination, genetic testing, genetic research, human genome, human rights, Russia, USA

Supporting Agencies

This work was supported by Russian Foundation for Basic Research grant No. 18-29-14009 «Theory and practice of legal regulation of the status of persons participating in scientific research of the genome of living organisms, their rights and obligations, limits of legal liability in Russia and foreign countries».

Abstract

The article presents a comparative analysis of the legal regulation of protection against genetic discrimination in the United States and Russia. It is noted that in the United States a number of legislative acts have been adopted on the mentioned topics, active work is being carried out by authorised departments to improve legal regulation in the field of genetic research and the use of their results, as well as in relation to the protection of citizens from genetic discrimination. In the United States, there is no single national act on the protection of citizens from genetic discrimination, which is a feature of this legal system. It is concluded that Russian legislation, as well as law enforcement practice on these issues are fragmented, have many gaps. However, in recent years, a lot of work has been done at the state level in Russia regarding the development of genetic technologies, as well as the creation of the necessary legal framework. It seems that the positive US regulatory experience can be used to improve the legal regulation of the Russian Federation in the field of protecting citizens from genetic discrimination.

Author Biography

Emil V. Alimov, Institute of Legislation and Comparative Law under the Government of the Russian Federation, 34 Bolshaya Cheryomushkinskaya Street, Moscow 117218, Russia

PhD (law); researcher at the department of constitutional law

References

Nanba SB, Akopyan OA, Alimov EV, Garmaeva MA, Bedoeva ZN. State programs for the development of genetic technologies. Opción. 2020;36(26):732–750.
Zawati MH, Van Ness B, Knoppers BM. Incidental findings in genomic research: a review of international norms. GenEdit. 2011;9(1):1–8.
Lévesque E, Joly Y, Simard J. Return of research results: general principles and international perspectives. Journal of Law, Medicine & Ethics. 2011;39(4):583–592.
Otlowski M, Taylor S, Bombard Y. Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics. 2012;13:433–454.
Lefebvre K. Genetic discrimination law in the United States: a socioethical & legal analysis of the Genetic information nondiscrimination act (GINA). Amherst: University of Massachusetts; 2015. 41 p.
Alimov EV. Genomic research legal regulation system: experience of Russia and the USA. RUDN Journal of Law. 2019;23(4):546–564.
French S. Genetic testing in the workplace: the employer’s coin toss. Duke Law and Technology Review. 2002;15:1–12.
Bogdanova EE. Legal problems and risks of genetic revolution: genetic information and discrimination. Lex Russica. 2019;6:18–29. Russian.