Preconception genetic screening in Russians’ assessments

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Abstract

The article presents the results of an all-Russian online survey (N = 1,653), conducted in 2024 and devoted to the investigation of the Russians’ attitudes toward predictive genetic testing at the pregnancy-planning stage – preconception carrier screening (PCS). Pregnancy planning is treated as a transforming social institution assimilating new value trends, one of which is the need to control potential risks to the health of future children. In the course of this study, empirical data were collected for the first time in Russia to characterize Russians’ awareness of and willingness to undergo such screening, as well as their experience with the procedure and related concerns. As a result, social factors that increase this willingness were identified, including prior experience with any genetic testing, the presence of chronic diseases, and respondents’ reproductive plans. Moreover, young Russians, along with members of highly educated and high-income groups, are at the peak of these social changes. It was also found that Russians possess limited knowledge about genetic diseases and their patterns of inheritance, which introduces certain caveats into the interpretation of the data obtained. Although predictive practices are gradually reshaping the institution of pregnancy planning, the routinization of PCS in our country remains a matter for the future.

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About the authors

Elena S. Bogomiagkova

Sociological Institute of FCTAS RAS

Author for correspondence.
Email: e.bogomyagkova@spbu.ru

Cand. Sci. (Sociol.), Senior Recearcher, Assoc. Prof. Department of Theory and History of Sociology

Russian Federation, St. Petersburg

Ekaterina A. Orekh

St. Petersburg State University

Email: e.orekh@spbu.ru

Cand. Sci. (Sociol.), Assoc. Prof. Department of Theory and History of Sociology

Russian Federation, St. Petersburg

Maria E. Glukhova

Email: mglukhova@eu.spb.ru

independent researcher

Russian Federation, Санкт-Петербург

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Supplementary files

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2. Fig. 1. Purposes of undergoing genetic testing, in % of those with experience of genetic testing, N = 215

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3. Fig. 2. Distribution of answers to the question: “Why would you not be willing to undergo genetic testing at the stage of pregnancy planning?”, in % of respondents not willing to undergo PCT, N = 140

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4. Fig. 3. Relationship between awareness of PKS and testing experience with proximity to the problem, in % of all respondents, N = 1653

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5. Fig. 4. Distribution of answers to the question: “What hereditary diseases do you know?”, in % of all respondents, N = 1653

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