Genomic Data Privacy and the Right to Science: Issues of Balance

Abstract

The paper examines the confidentiality of genomic data. According to the author, genomic data is a special concept in the field of personal data and requires increased regulatory guarantees of legal protection and safeguards. In addition, the author considers the issue of the grounds for disclosure and use of this type of information. According to the researcher, this is possible only if there is a public interest in conducting scientific research that contributes to the implementation of the health function by the state. The right to science, enshrined in the Universal Declaration of Human Rights of 1948, can serve as a regulatory basis for this. The author notes that this right has not yet been established at the level of national legislation, which significantly complicates its understanding and definition of restrictions in its implementation. The paper also emphasizes the uniqueness of genomic information, which is characterized by features of identifiability and relative danger. These features are specified by the author in terms of the purpose and scope of the use of genetic data, their informational content, as well as the degree of their influence on the rights of the relevant person. In conclusion, the author puts forward am idea of one best way to balance the right to science and genomic data privacy, through which it will be possible to ensure both effective legal protection and a stable course of scientific evolution and progress.