Analysis of Possible Application of Personal Data, Personal Secrets, and Medical Confidentiality to the Regulation of Relations Concerning Genetic Information

Abstract

The analysis of the European and Russian legislation and documents of international organizations made it possible to draw the following conclusions. The uniqueness of genetic data is determined by the following characteristics. These data are relatively static, do not develop by themselves during life. They are in principle unchanged, since it is impossible to simultaneously modify all identical genes present in all cells of the same organism. They can be invariant with respect to their carrier, going beyond the individual carrier through transmission from generation to generation. The subject can be identified using various identifiers specific to the subject’s physiological, genetic, psychological, cultural, or social identity, such as biometric data such as facial image, fingerprints, iris, venous palm pattern, genetic markers, and "digital" footprints. The legal regime of secrecy can be applied to genetic information by analogy, taking into account the specifics of the source of origin of genetic information and special rules for its processing. However, existing restricted access information regimes do not take into account the specifics of genetic data. The difference between genetic information and other personal data and medical secrecy protected in the regimes is that other family members — blood relatives or a spouse may be interested in it, in addition to the information carrier itself, which is not taken into account in the current Russian legislation. Special mechanisms for the legal protection of genetic information should be introduced, which should be enshrined in a special law "On genetic information".