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[Storage, access and protection of full genome sequencing data in Russia and foreign countries: practical aspect.]
Suranova, T G; Suvorov, G N.
Afiliação
  • Suranova TG; Federal Research and Clinical Center of the Federal Medical-Biological Agency, 125371, Moscow, Russia.
  • Suvorov GN; Federal Research and Clinical Center of the Federal Medical-Biological Agency, 125371, Moscow, Russia.
Klin Lab Diagn ; 64(9): 578-584, 2019.
Article em Ru | MEDLINE | ID: mdl-31610112
The relevance of the chosen topic is due to the need to resolve legal problems in the field of observance of human and civil rights and freedoms when storing, accessing and protecting full genome sequencing data. The purpose of this study is the formation of conceptual criteria on the basis of which a new model of regulatory regulation of this sphere of public relations will be built. To achieve this goal, the tasks of studying the regulatory legal acts in force in Russia and a number of foreign countries were solved. General scientific, private-scientific and special methods of scientific knowledge (system-structural, formal-legal) were used. In order to formulate conceptual criteria of practical importance for storing access and protecting genome-wide sequencing data in Russia and foreign countries, it was proposed to develop clarifying characteristics or gradation of human and civil rights and freedoms in the context of realization of public state interests. It is also necessary to unify the content of the conceptual apparatus of normative acts taking into account the peculiarities of genetic information, work out the procedure for accessing data, and provide for a system of its depersonification. For the first time, the authors substantiate the need to transform the content of the human rights declared by the state to life, freedom, personal and family secrets, and others with the development of new technologies in the field of DNA scanning. The basic criteria that are of practical importance for the storage, access and protection of genome-wide sequencing data indicate the need to improve normative concepts, establish categories of persons with the right to access such data, normatively fix the conditions for observing an anonymous survey, and also refuse to get acquainted with the results , to develop mechanisms for the depersonification of the obtained genetic information).
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Armazenamento e Recuperação da Informação / Segurança Computacional / Confidencialidade / Bases de Dados de Ácidos Nucleicos Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: Asia / Europa Idioma: Ru Revista: Klin Lab Diagn Assunto da revista: TECNICAS E PROCEDIMENTOS DE LABORATORIO Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Federação Russa

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Armazenamento e Recuperação da Informação / Segurança Computacional / Confidencialidade / Bases de Dados de Ácidos Nucleicos Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: Asia / Europa Idioma: Ru Revista: Klin Lab Diagn Assunto da revista: TECNICAS E PROCEDIMENTOS DE LABORATORIO Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Federação Russa