APPROACHES TO LEGAL REGULATION OF GENETIC TESTING IN THE RULE-OF-LAW STATE

Authors

  • Svetlana Chubukova The Kutafin Moscow State Law University (MSAL)

DOI:

https://doi.org/10.33184/pravgos-2020.2.13

Keywords:

GENETIC TESTING, GENETIC INFORMATION, RULE-OF-LAW STATE, DISCRIMINATION, PERSONAL DATA, GENETIC DATA BANKS

Abstract

The relevance of legal regulation of genetic testing is determined by the fact that genetic data can be used not only for the good, but also for discrimination against a person.

Aim: To analyze the approaches of different countries to the development of legal regulation of genetic testing and the use of genetic data.

Methods: empirical methods of comparison, description, interpretation; theoretical methods of formal and dialectical logic; private scientific methods: comparative legal and the method of interpretation of legal norms.

Results: Two approaches are identified in legal regulation of the use of genetic data. The first approach involves limiting the freedom of contract in the field of employment or insurance, introducing general prohibitions on human rights discrimination on the grounds of genetic characteristics or creating special legal rules for insurance companies and employers. The second approach is to enact comprehensive privacy laws to protect genetic data from collection, use and disclosure without the consent of the parties involved. It is concluded that only an integrated approach to legal regulation of genetic researches and the use of genetic information, including the introduction of general prohibitions on discrimination on the ground of genetic characteristics in human rights legislation, the creation of special legal norms for insurance companies and employers, the establishment of a strictly controlled regime for genetic data use will ensure the protection of the rights of subjects of genetic data and the bio-security of the state.

References

Богданова Е.Е. Правовые проблемы и риски генетической революции: генетическая информация и дискриминация // Lex Russica. 2019. № 6 (151). С. 18-29.

Волотовский И., Полешко А. CRISPR/CAS9 - система редактирования геномов. Прорыв в медицинской биологии и генной терапии? // Наука и инновации. 2017. № 12. С. 59-64.

Пальцев М. А. Персонифицированная медицина // Наука в России 2011. № 1. С. 12-17.

Савченко В. Геном человека: этические вызовы и риски // Наука и инновации. 2010. № 12(94). С. 36-40.

Правовые основы биоэкономики и биобезопасности: монография / отв. ред. А.А. Мохов, О. В. Сушкова. - М.: Проспект, 2020.

Шугуров М.В. Международно-правовой принцип научных исследований и глобализации научно-технологического прогресса // Российская юстиция. 2012. № 2. С. 17-21.

Joly Yann, Braker Maria, Michael Le Huynh. Genetic discrimination in private insurance: global perspectives // New Genetics and Society. 2010. Vol. 29. Issue 4. P. 351-368.

Rose Nikolas. Mutation génétique. // Vacarme. 2007. № 40. P. 34-37.

Yaniv Erlich, Tal Shor, Itsik Pe'er, Shai Carmi. Identity inference of genomic data using long-range familial searches // Science. 2018. Vol. 362. Issue 6415. P. 690-694.

Bogdanova E.E. Pravovyye problemy i riski geneticheskoy revolyutsii: geneticheskaya informatsiya i diskriminatsiya (Legal problems and risks of the genetic revolution: genetic information and discrimination). Lex Russica, 2019, No. 6 (151), pp. 18-29.

Volotovsky I., Poleshko A. CRISPR/CAS9 - sistema redaktirovaniya genomov. Proryv v meditsinskoy biologii i gennoy terapii? (CRISPR/CAS9-genome editing system. A breakthrough in medical biology and gene therapy?). Science and innovation, 2017, No. 12, pp. 59-64.

Paltsev M.A. Personifitsirovannaya meditsina (Personalized medicine). Science in Russia, 2011, No. 1, pp. 12-17.

Savchenko V. Genom cheloveka: eticheskiye vyzovy i riski (Human Genome: ethical challenges and risks). Science and innovation. 2010. No. 12 (94), pp. 36-40.

Pravovyye osnovy bioekonomiki i biobezopasnosti (Legal bases of bio economics and Biosafety), monograph, ed. by A.A. Mokhov, O.V. Sushkova. Moscow, Prospect, 2020.

Shugurov M.V. Mezhdunarodno-pravovoy printsip nauchnykh issledovaniy i globalizatsii nauchno-tekhnologicheskogo progressa (International legal principle of scientific research and globalization of scientific and technological progress). The Russian justice, 2012, No. 2, pp. 17-21.

Joly Yann, Braker Maria, Michael Le Huynh. Genetic discrimination in private insurance: global perspectives. New Genetics and Society, 2010, Vol. 29, Issue 4, pp. 351-368.

Rose Nikolas. Mutation génétique. Vacarme, 2007, No. 40, p.34.

Yaniv Erlich, Tal Shor, Itsik Pe'er, Shai Carmi. Identity inference of genomic data using long-range familial searches. Science, 2018, Vol. 362, Issue 6415, pp. 690-694.

Published

2020-02-01

How to Cite

[1]
Чубукова, С. 2020. APPROACHES TO LEGAL REGULATION OF GENETIC TESTING IN THE RULE-OF-LAW STATE. The rule-of-law state: theory and practice. 16, 2 (Feb. 2020), 145–156. DOI:https://doi.org/10.33184/pravgos-2020.2.13.

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Section

EDITORIAl