GENETIC INFORMATION: LEGAL NATURE AND CONCEPTUAL AND CATEGORICAL APPARATUS

SVITLANA IASECHKO, ELENA KOKHANOVSKAYA, IRYNA SENYUTA

Résumé


The authors conduct a thorough analysis of the legal nature of genetic information and its definition in the context of Ukrainian and European Union legislation. It is established that genetic information, which is the basis for the development of medicine, opens up new horizons for improving the diagnosis, prevention and treatment of not only patients with rare diseases, but also any diseases, but the circulation of such genetic information raises a number of legal challenges. The article examines the existing approaches to legal regulation of such relations, in particular, the issue of defining the concept of "genetic information". A comparative analysis of approaches to the definition and regulation of relations regarding genetic information in the laws of Ukraine and the European Union is made, with an emphasis on the need to harmonise Ukrainian legislation with international standards. The authors emphasises the importance of developing a clear and effective regulatory framework that would ensure a balance between the protection of human rights and the possibilities of using genetic information for the public good. The problems arising from the different interests of the parties that have access to genetic data, including government agencies, insurance companies and medical institutions, are revealed. The author offers recommendations for improving Ukrainian legislation aimed at increasing the level of protection of genetic information and its compliance with international standards. Particular attention is focused on the need to improve the terminology used in national legal acts in order to avoid legal uncertainty and ensure clearer regulation of genetic data. It is stated that this study is an important contribution to the study of the legal aspects of genetic information, and the author emphasises the need to continue working on optimising the legal environment which would take into account both the human right to privacy and the general interests of society.


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Références


ARISTOVA, I. V. (2000). State information policy: Organisational and legal aspects. In O. M. Bandurka (Ed.), Kharkiv, p. 9.

ANNAS, G. J., GLANTZ, L. H., & ROCHE, P. A. (1995). Drafting the Genetic Privacy Act: Science, policy, and practical considerations. Journal of Law, Medicine & Ethics, 23(4), 362.

BELGIUM. (1987). Koninklijk besluit van 14 december 1987 houdende vaststelling van de normen waaraan de centra voor menselijke erfelijkheid moeten voldoen. Belgisch Staatsblad, 25 december 1987.

BELGIUM. (2003). Law of 28 January 2003 on medical examinations performed within the framework of employment relations. Belgisch Staatsblad, 9 April 2003.

BELGIAN GOVERNMENT. (2014). Wet van 4 april 2014 betreffende de verzekeringen [Law of April 4, 2014 on Insurance].Belgian Official Gazette. Retrieved from https://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=nl&la=N&cn=2014040423&table_name=wet

Bezrukov, V. F. (2006). Genome. In I. M. Dziuba, A. I. Zhukovskyi, M. H. Zhelezniak [et al.] (Eds.), Encyclopedia of Modern Ukraine [Electronic resource]. Institute of Encyclopedic Research of the NAS of Ukraine. Retrieved from https://esu.com.ua/article-29086

CLAYTON, E. W., EVANS, B. J., HAZEL, J. W., & ROTHSTEIN, M. A. (2019). The law of genetic privacy: Applications, implications, and limitations. Journal of Law and the Biosciences, 6(1), 1–36. https://doi.org/10.1093/jlb/lsz007 (accessed 21.07.2024).

CALLENS, S. (1995). Goed geregeld? Het gebruik van medische gegevens voor onderzoek. Antwerpen: Maklu.

CORNELIS, C. (2021). Genetische Gegevens En Verzekeringen. Antwerpen: Universiteit Antwerpen.

COUNCIL OF EUROPE. (1997). Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: Convention on human rights and biomedicine. Retrieved from https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164

DE PAOR, A. (2017). Genetics, disability and the law: Towards an EU legal framework. Cambridge: Cambridge University Press.

DE HERT, P., & DE SCHEPPER, T. (2016). The new European data protection regulation of 27 April 2016. CBR Yearbook 2015/2016, 23.

DEFLOOR, S., & NYS, H. (2011). Patiëntengegevens en verzekeringen: Een onmogelijke relatie? In Over grenzen. Liber Amicorum Herman Cousy (pp. 496). Antwerpen: Intersentia.

EXPLANATORY DICTIONARY OF THE UKRAINIAN LANGUAGE. (2024). Retrieved from https://slovnyk.ua/index.php?swrd=%D0%B2%D1%96%D0%B4%D0%BE%D0%BC%D0%BE%D1%81%D1%82%D1%96

HAQUE, F. N., GOTTESMAN, I. I., & WONG, A. H. C. (2009). Not really identical: Epigenetic differences in monozygotic twins and implications for twin studies in psychiatry. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 151C, 136.

HOGE GEZONDHEIDSRAAD. (2012). Advies nr. 8714 - Genetische zelftests, april 2012.

KALYUZHNYI, R. A., KRUPCHAN, O. D., PAVLOVSKYI, V. D., HUTSALIUK, M. V., TSYMBALIUK, V. S., & SHVETS, M. Y. (2002). Informatisation, law, management: Organisational and legal issues (M. Y. Shvets & O. D. Krupchan, Eds.). Kyiv.

KOHANOVSKA, O. V. (2006). Theoretical problems of information relations in civil law: Monograph. Kyiv: Kyiv University Publishing and Printing Centre.

KUNAKH, V. A. (2006). Genetic information. In I. M. Dziuba, A. I. Zhukovskyi, M. H. Zhelezniak [et al.] (Eds.), Encyclopedia of Modern Ukraine [Electronic resource]. Institute of Encyclopedic Research of the NAS of Ukraine. Retrieved from https://esu.com.ua/article-29067

TACK, S., & DIERICKX, A. (2008). Nader gebruik van lichaamsmateriaal voor wetenschappelijk onderzoek: Toelaatbaarheid getoetst vanuit het recht op respect voor het privéleven (art. 8 EVRM). T.Gez., 2008-09, 391.

VERKHOVNA RADA OF UKRAINE. (2022). On state registration of human genomic information: Law of Ukraine of 09.07.2022 No. 2391-IX. Retrieved from https://zakon.rada.gov.ua/laws/show/2391-20#Text

VERKHOVNA RADA OF UKRAINE. (2010). On the protection of personal data: Law of Ukraine of 01.06.2010 No. 2297-VI.Retrieved from https://zakon.rada.gov.ua/laws/show/2297-17#Text

VERKHOVNA RADA OF UKRAINE. (1992). On information: Law of Ukraine of 02.10.1992 No. 2657-XII. Retrieved from https://zakon.rada.gov.ua/laws/show/2657-12#Text

VERKHOVNA RADA OF UKRAINE. (2003). On electronic documents and electronic document management: Law of Ukraine of 22.05.2003 No. 851-IV. Retrieved from https://zakon.rada.gov.ua/laws/show/851-15#Text

VERKHOVNA RADA OF UKRAINE. (2020). On electronic communications: Law of Ukraine of 16.12.2020 No. 1089-IX.Retrieved from https://zakon.rada.gov.ua/laws/show/1089-20#Text

VERKHOVNA RADA OF UKRAINE. (2003). Civil Code of Ukraine: Law of 16.01.2003 No. 435-IV. Retrieved from https://zakon.rada.gov.ua/laws/card/435-15

VERKHOVNA RADA OF UKRAINE. (1992). Fundamentals of the Legislation of Ukraine on Healthcare: Law of Ukraine of 19 November 1992 No. 2801-XII. Retrieved from https://zakon.rada.gov.ua/laws/show/2801-12#Text.

UN EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANISATION (UNESCO). (1997). Universal Declaration on the Human Genome and Human Rights. Retrieved from https://www.ohchr.org/en/instruments-mechanisms/instruments/universal-declaration-human-genome-and-human-rights

WIENER, N. (1950). The human use of human beings: Cybernetics and society. Boston: Houghton Mifflin. Retrieved from https://books.google.com.ua/books/about/The_Human_Use_of_Human_Beings.html?id=QqwgAAAAMAAJ&redir_esc=y




DOI: http://dx.doi.org/10.26668/revistajur.2316-753X.v3i83.8076

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