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.
Highlights
Защита генетических данных как конфиденциальной информации о здоровье
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
Summary
Защита генетических данных как конфиденциальной информации о здоровье. Генетическая информация содержит конфиденциальные данные, которые могут раскрыть информацию о состоянии здоровья соответствующего лица как носителя ДНК. Генетические данные могут использоваться в двух основных направлениях: для изучения особенностей отдельных лиц в результате анализа их генетических данных; для идентификации лиц по их генетическим отпечаткам. Doctor of Law, Professor, Department of IT Law and Digital Technologies, Kutafin Moscow State Law University (MSAL) ul.
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