Protection of Genetic Data in Genetic Testing and Gene-Therapy Treatment: IT Law Aspects
https://doi.org/10.17803/1994-1471.2020.114.5.065-072
Abstract
The paper explores the problems of protection of genetic data from the perspective of IT law. Methodologically, the study is based on the system approach, methods of analysis and synthesis, comparative legal approach. In the paper, genetic information is defined as confidential health information, an object of population genetics and biometric data. The analysis makes it possible to conclude that the protection of genetic information requires the introduction of special mechanisms of legal protection, namely: the regime of strictly controlled use. Genetic data can be used in two main areas: to examine the characteristics of individuals based on the analysis of their genetic data; to identify individuals by their genetic data prints. Genetic analysis of facial characteristics can only be done for medical or scientific purposes. The person’s consent must be obtained before the study is carried out. Russian legislation requires clarification concerning the form and duration of such a consent. Analysis of DNA images in civil proceedings can only be carried out at the request of the court and with the consent of the person concerned. Prohibition of “discrimination” based on health conditions, including prohibition of taking into account the results of genetic tests predicting a yet unidentified disease or genetic predisposition to a disease, can be interpreted as a general prohibition of the use of “prognostic” genetic tests for economic and social purposes.
Keywords
information,
DNA,
genetic information,
protection of genetic information,
disclosure and confidentiality of genetic testing results,
informed consent,
biometric data,
confidential information,
legal regime of genetic information,
population genetics
Supporting agencies: The reported study was funded by RFBR according to the research project № 18-29-14033
About the Authors
I. M. Rassolov
Kutafin Moscow State Law University (MSAL)
Russian Federation
Russian Federation
Doctor of Law, Professor, Department of IT Law and Digital Technologies
ul. Sadovaya-Kudrinskaya, d. 9, Moscow, Russia, 125993
S. G. Chubukova
Kutafin Moscow State Law University
Russian Federation
Russian Federation
Cand. Sci. (Law), Associate Professor, Department of IT Law and Digital
Technologies
ul. Sadovaya-Kudrinskaya, d. 9, Moscow, Russia, 125993
References
1. Izhevskaya V. L. Eticheskie i pravovye aspekty geneticheskogo testirovaniya i skrininga // Bioetika i gumanitarnaya ekspertiza. — 2007. — № 1. — URL: http://www.intelros.ru/readroom/bioyetika-igumanitarnaya-yekspertiza/vyp-1-2007/7357-yeticheskie-i-pravovye-aspekty-geneticheskogo-testirovaniyai-skrininga.html (data obrashheniya: 15.03.2020).
2. Vitalis A. L’Incertaine Révolution numérique. — London, 2016. — 117 p.
3. Rouvroy A. Homo juridicus est-il soluble dans les données?// Droit, Normes et Libertés dans le Cybermonde. — Bruxelles : Larcier, 2018. — Pp. 417—444.
4. Le Douarin N. Dans le secret des êtres vivants. Itinéraire d’une biologiste. — Paris : Robert Laffont, 2012. — 464 p
Review
For citations:
Rassolov I.M., Chubukova S.G. Protection of Genetic Data in Genetic Testing and Gene-Therapy Treatment: IT Law Aspects. Actual Problems of Russian Law. 2020;15(5):65-72. (In Russ.) https://doi.org/10.17803/1994-1471.2020.114.5.065-072
Views:
737
Email this article 