According to our results, it is clear that about 60% of the responding schools were teaching the content of “genetics” in cancer education and that many of the respondents felt that teaching “genetics” was necessary. The main categories of reasons for this position were “acquisition for accurate knowledge” and “use for health care.” These reasons are consistent with the goals of cancer education and may stimulate teachers’ motivation. Education on “human genetics” may enhance cancer education further. In Japan, the Genetic Education Awareness Committee of the Japanese Society for Genetic Counseling and the Education Promotion Committee of the Japan Society of Human Genetics have been working with teachers in the field for more than 10 years on the implementation of human genetic education in secondary education (The Japan Society of Human Genetics Committee for the Promotion of Education 2010; The Japanese Society of Human Genetics Committee for the Promotion of Education・Japanese Society for Genetic Counseling Committee on Genetic Education 2014). However, despite their action, human genetic education has not been introduced into public education nationwide. The current Japanese government curriculum guidelines address cancer education and indicate that cancer should be taught as part of lifestyle-related diseases (Ministry of Education, Culture, Sports, Science, and Technology 2018c; Ministry of Education, Culture, Sports, Science, and Technology 2019b). The causes of carcinogenesis are different for each patient, and emphasizing aspects of the disease as a lifestyle-related disease may increase the stigma surrounding cancer patients. Therefore, to teach cancer as a genetic disease, it is desirable to include content in the government curriculum guidelines. In addition, the government curriculum guidelines were formulated on a subject-by-subject basis. For example, the contents specified in the government curriculum guidelines for health and physical education are taught by health and physical education teachers. In this study, approximately half of the respondents responsible for cancer education were health and physical education teachers. MEXT recommends the use of guest lecturers in cancer education because of the expertise this education requires (Ministry of Education, Culture, Sports, Science, and Technology 2021). To teach genetics appropriately, it seems important to collaborate with science and social studies teachers and genetic medicine specialists. Inter-subject collaboration is essential from the perspective of considering learning achievements, including their developmental stages. In our study, about half of the respondents collaborated with other subjects and teachers, but few collaborated with science and social studies. To promote a multifaceted understanding of cancer, not only as it relates to lifestyle-related diseases but also including the aspect of “genetics,” we believed that it was also important to strengthen collaboration with other subjects, such as science and social studies, and to make the approach an appropriate educational activity for the entire school.
In our study, the teachers experienced a high degree of difficulty in teaching “genetics” in cancer education. To overcome this difficulty, we propose two solutions. The first is improvement of teachers’ genetic literacy, that is, the dissemination of knowledge and information related to “genetics” that is taught in cancer education. In our study, the category “negative image of genes” was provided as a reason by the group that answered that teaching “the molecular genetic mechanisms of cancer” as part of cancer education was unnecessary. Similarly, in the group that answered that teaching about “the molecular genetic mechanisms of cancer” is difficult, “need for consideration” was a category provided in response to the question. We considered that this difficulty was due to the complexity of genetics, which is not easily understood by non-specialists, and that there were problems unique to Japan. The reason for the difficulty in distinguishing the difference is that the meanings of two different words in English, “inheritance” and “gene,” are shared by the same word, “Iden,” in Japanese. It has been suggested that this may lead to a lack of understanding of the difference between “hereditary diseases” and “diseases caused by gene mutation,” which may lead to further misunderstanding of “genetics” (Watanabe 2019). Moreover, Boerwinkel et al. (2017) emphasized in their survey of genetic literacy not only Mendelian inheritance but also an understanding of the interaction of environmental factors in the expression of all traits and an understanding and knowledge of the uncertainty of genetic information. For instance, incomplete penetrance is a characteristic of hereditary tumors. In this survey, 40% or more of the teachers thought that family members with “hereditary cancer (hereditary tumor)” would always develop cancer. Research has shown that it is difficult for teachers to understand molecular genetics, such as incomplete penetrance. Previous studies have shown that biased information regarding cancer held by individual teachers may lead to a decrease in the feasibility of cancer education (Yako-Suketomo et al. 2012). Given the current situation, in which 60% of the respondents taught “genetics,” efforts to improve teachers’ genetic literacy are considered important. To facilitate this improvement, we propose that it is necessary for teachers to have the opportunity to learn about “genetics” and to enhance educational resources to support them. Paasche-Orlow et al.(2007), who established a conceptual framework for individual health literacy, suggested that causal mechanisms of the health literacy–health outcomes relationship are due not only to patient-level characteristics but also to attributes of the healthcare system and cited access to health care as one of the factors. In Japan, genomic tumor profiling tests have been covered by the National Health Insurance beginning in 2019, and cancer genome medicine is steadily being implemented. However, a survey conducted in 2018, before insurance coverage was applied, reported that the recognition of genomic tumor profiling tests was low among cancer patients and their families (Nagai et al. 2019). In addition, the Third Basic Plan for the Promotion of Cancer Control mentions that education and popularization of cancer genome medicine should be promoted as measures to be implemented (Ministry of Health, Labor, and Welfare 2018). It is necessary to survey the level of recognition of cancer genome medicine, including genomic tumor profiling tests, after its coverage by the National Health Insurance began as well as to work with prefectural health and welfare departments to improve opportunities for teachers to learn about “genetics” and educational resources to assist them.
The second solution is communication, which considers the family history of students. In Japan, it has been reported that there are approximately 56,000 cancer survivors with children under the age of 18 who are newly diagnosed with cancer each year and approximately 87,000 children who have parents with cancer; the average age of the children is 11.2 years old (Inoue et al. 2015). Therefore, a support system for children who have parents with cancer has become an issue. This support is also important in schools, where children spend a great deal of their lives. The report on cancer education in schools also calls for consideration of children with childhood cancer, children whose families include cancer patients, and children who have lost a family member to cancer when conducting cancer education (Ministry of Education, Culture, Sports, Science, and Technology 2015). Schools are attempting to identify students who need to be considered before starting cancer education. In our study, “need for consideration” was extracted as the top category in the reasons for considering the teaching “genetics” unnecessary and difficult. This suggests that teachers attempt to consider students from a psychosocial perspective when conducting cancer education. Some also expressed that they did not feel the need to teach “genetics” or did not want to communicate about it because they were concerned about the psychological impact on students. In a report on a workshop on cancer and genetics held for 12–13-year-olds in the Welsh region of England, far from making genetics something to be discussed easily and naturally, this project showed that anti-genetics attitudes continue to prevail in society (Iredale and Madden 2014). Additionally, concerns were expressed that unless healthcare professionals, teachers, and others are encouraged to facilitate genetic conversations with children, there is no chance that genetics literacy will improve for this generation (Iredale and Madden 2014). Therefore, it is important to account for the necessary considerations in treating “genetics” in cancer education as well as how to communicate this to students. There are few countries where cancer education is uniformly provided based on government curriculum guidelines, such as Japan. In other countries, efforts by private organizations and hospitals support cancer education at schools have been reported (Van Kirk Villalobos et al. 2012; Kye et al. 2019; Barros et al. 2014). In the United States, an interdisciplinary team of pediatric oncologists, nurses, schoolteachers, genetic counselors, child life specialists, and other professionals collaborated to develop educational materials and curricula, which were reported to be very well received by teachers, students, and parents (Van Kirk Villalobos et al. 2012). Although there are differences between the educational systems overseas and that in Japan, we believe that the involvement of appropriate professionals is necessary to facilitate the discussion of more specific considerations. In the future, it is hoped that the expertise of genetic counselors and child life specialists, who also provide psychosocial support, will be utilized to examine the content of cancer education and to develop educational materials.
Limitations of this study
This study was conducted on schoolteachers involved in cancer education as a model project that was part of the Comprehensive Support Project for Cancer Education from fiscal years 2016 to 2018, and a questionnaire survey was conducted a long period of time after the implementation of said cancer education. Therefore, recall bias may have occurred. In addition, because the number of teachers in elementary education was small, it is necessary to deepen the examination of individual learning achievement levels, including developmental stages, and to generalize the data in the future.