Scholarly record

ETHICAL AND LEGAL ASPECTS OF SCREENING FOR HEREDITARY DISEASES AS A SPECIAL TYPE OF MEDICAL SERVICE: A SOCIOLOGICAL ANALYSIS

E. Zaitseva, A. Nechkin, L. Voronina

Abstract

In this article, the authors review the ethical and legal aspects of screening of newborns for hereditary diseases in the context of the implementation of this medical technology as a specific medical service. In Russia, screening of newborns for phenylketonuria started in 1985, and since 1993 for congenital hypothyroidism, since 2006 - screening for cystic fibrosis, adrenogenital syndrome and galactosemia. In Russia this medical service is one of the services “imposed” and obligatory for all children born regardless of their place and living conditions. Purpose of the article is study of ethical and legal aspects of technologies for screening of newborns for hereditary diseases by the means of the analysis of the methodological principles of mass screening of newborns, federal and ministerial-level regulatory acts relating and regulating this technology as a public service, analysis of statistical information. The analysis revealed that for the implementation of screening and coverage of 100% of newborns, a certain algorithm and centralized organizational and methodological management of institutions that participating in screening with support from regional health authorities is used. At the same time, the legal framework regulating the screening of the fact is absent and needs to be developed taking into account positive foreign experience, the opinion of the professional medical community, as well as public opinion, especially regarding certain ethical and legal issues.

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