Fundamental knowledge taught in compulsory education for effective genetic counseling: A qualitative study of descriptions in textbooks

In genetic counseling, information must be provided in ways 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. In order 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 chose 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 also analyzed for methodological triangulation. Codes, subcategories, and categories were generated from contexts that met the following criteria: the contents included in the official textbook for clinical geneticists, the contents derived from such descriptions that were related to genetic counseling, and the 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 disease, (3) Efforts and barrier 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.