Abstract
In genetic counseling, information must be provided in ways that the client and general public can understand to ensure that decisions are made autonomously. To realize this, we must assess the extent of knowledge held by the general public regarding genetics. To identify the client’s original knowledge before genetic counseling, we explored the fundamental knowledge related to genetic counseling that is taught in Japanese compulsory education. A qualitative study was conducted. We selected 50 textbooks for compulsory education (Japanese, social studies, science, health and physical education, technology and home economics, morality, and life) that had been used in more than half of the districts in Japan. The text data were analyzed using qualitative content analysis, and quantitative data were analyzed for methodological triangulation. Codes, subcategories, and categories were generated from the contexts that met the following criteria: the contents included in the official textbook for clinical geneticists, contents derived from such descriptions that were related to genetic counseling, and contents clearly related to genetics. Among the 50 textbooks, 33 textbooks contained fundamental knowledge regarding genetic counseling. A qualitative content analysis identified four major categories: (1) basics of genetics, (2) understanding and control of diseases, (3) efforts and barriers to the realization of a harmonious society, and (4) technology and humans. We found that fundamental knowledge related to genetic counseling is directly or indirectly taught in compulsory education. Our results are an important resource for understanding the client’s knowledge baseline and will be helpful for effective genetic counseling.
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The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.
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Eri Sakai conceptualized and designed the study, conducted the acquisition, analyses, and interpretation of data, drafted the initial manuscript, and reviewed and revised the manuscript. Takahiro Yamada conceptualized and designed the study, conducted the acquisition, analyses, and interpretation of data, drafted the initial manuscript, and reviewed and revised the manuscript. Tomomi Funaki contributed to study design and data analyses. Miho Iwakuma designed the study, contributed to data analyses, and critically reviewed and revised the manuscript. Harumo Osawa contributed to the acquisition and analyses of the data. Kana Morimoto contributed to the acquisition and analyses of the data. Shinji Kosugi contributed to the analyses and interpretation of the data, and critically reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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Sakai, E., Yamada, T., Funaki, T. et al. Fundamental knowledge taught in compulsory education for effective genetic counseling: a qualitative study of descriptions in textbooks. J Community Genet 14, 263–274 (2023). https://doi.org/10.1007/s12687-023-00641-3
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DOI: https://doi.org/10.1007/s12687-023-00641-3