When and how to enlighten citizens on genetics and hereditary cancer: A Web survey of online video viewers

With the rapid expansion of genomic medicine, citizens are compelled to think about genetics in daily life. Therefore, this study aims to explore appropriate types of educational media and methods of enlightenment activities for genetics and hereditary cancer. For this purpose, we launched the public awareness project, planned and run by genetic medicine experts. In this study, we presented an 18-minute YouTube video on genetics and hereditary cancer to participants at Science Agora 2020, and administered a web questionnaire to investigate their opinions about when and how citizens should start learning about genetics and hereditary cancer. We recruited 133 participants who watched the video. Among them, only 35 (26.3%) responded to the questionnaire. Most of the respondents understood and appreciated the contents of the video. They identi�ed websites, videos, manga, and books as suitable learning media, irrespective of sex, age, or profession. Moreover, they highlighted upper elementary school or junior high school as appropriate educational stages to start learning about genetics and hereditary cancer to facilitate collecting their own genetic information by themselves. Our �ndings show that educational institutions should provide opportunities to learn about genetics and hereditary cancers, especially for upper elementary school and junior high school students, using learning media, such as videos, depending on their level or demand.


Introduction
The development of personalized cancer medicine using the genetic information of cancer cells is expected to accelerate (Kumaki et al. 2019).It is necessary to promote the genetic literacy of ordinary citizens and to establish a comprehensive system that can lead to more advancements in genomic medicine; however, such system has not been developed yet (Kosugi 2019).
In Japan, "cancer education" focusing on cancer screening and prevention has been implemented in elementary, junior high, and high schools since 2014 under the "Comprehensive Support Project for Cancer Education."Cancer education in schools is positioned as a health and physical education subject in the Courses of Study established by the Ministry of Education, Culture, Sports, Science and Technology, focusing on cancer screening and prevention with a strong emphasis on lifestyle-related diseases (Ministry of Education, Culture, Sports, Science and Technology 2017, 2018).Additionally, in 2018, "the recommendation on the selection of core bases / bases / a liated hospitals for cancer genomic medicine and the information transmission process in genomic medicine" was issued in Japan (Japan Agency for Healthcare Research and Development 2019a).Moreover, in 2019, the "cancer gene panel test," which analyzes hundreds of cancer-related genes at once so that the optimal treatment for each patient can be selected using the genomic information of cancer cells, was covered by insurance.
Nevertheless, this remain insu cient for a comprehensive understanding of cancer (Ministry of Health, Labour and Welfare 2015).Watanabe (2017) nds few references to human genetics and genomic medicine in the curriculum guidelines for science education in junior high schools and high schools (Ministry of Education, Culture, Sports, Science and Technology 2017, 2018) and in textbooks used in primary and secondary education.
Therefore, most citizens have limited opportunities to learn about basic human genetics, which makes them prone to impaired judgments, misunderstandings, or anxiety, as they are concerned that they or their blood relatives may be unable to make decisions about their own health and treatment based on genetic information.These can prevent acquiring correct knowledge, hinder smooth communication with medical professionals, and reduce their interest in learning about various diseases, especially cancer and the rapidly expanding elds of personalized cancer medicine and genetic medicine.
Recently, information technology has been rapidly advancing, increasing the opportunities for citizens to obtain medical information by searching on the Internet (Ministry of Internal Affairs and Communications 2014).In the past, comic books (Hiraoka 2016; Japan Agency for Medical Care and Development 2019b) and dramas (Kobayashi et al. 2019) have been used to educate the public about genetics.However, there are no reports on the use of video media, such as online video-sharing platforms, to educate the public about genetics and hereditary cancer.Therefore, this study aims to explore appropriate educational media and methods of enlightenment activities for genetics and hereditary cancer.For this purpose, we launched the project "Genetic Cafe," a public awareness project planned and run by genetic medicine experts.In addition, at the science event "Science Agora 2020" for the general public hosted by Japan Science and Technology Agency (JST), a YouTube video under the name of "Genetics Cafe: Let's Know Genetics" was presented to the participants, and then a questionnaire survey was conducted for viewers.
This study examines effective educational policies for genetics and hereditary cancer, explores appropriate types of educational media and methods of enlightening activities.The ndings of this study can be used as a reference for the best educational strategies for promoting knowledge on personalized cancer medicine and genomic medicine to realize more effective health management and cancer prevention.
The remainder of this paper us structured as follows.Section 2 describes the data and methods employed in the study.Sections 3 and 4 present and discuss our results, respectively.Section 5 summarizes the conclusions of the study.

Materials And Methods
In this study, we thought that a questionnaire survey should be conducted on respondents of various ages who have a general correct understanding of genetics and hereditary cancer.Therefore, we presented a video to participants at the "Genetic Cafe" in Science Agora 2020, one of the largest science events in Japan, to convey essential information about genetics and hereditary cancers.Then, we asked the video viewers to complete a post-viewing web questionnaire.
Science Agora is an annual meeting that has been held every November since 2006.It is a forum that is open to everyone with the purpose of conncecting science and society through connecting parties from different elds, sectors, generations, and nationalities to promote activities in each region independently.Government o cials, scientists, business operators, media personnel, and citizens participate in this forum to present their ideas to connect society and science from their respective standpoints.

Creating the video 2.1.1 Video Creation and Overview
We chose YouTube, the world's largest video-sharing platform (Visual capitalist 2019; Pew research center 2018), as the medium for presenting the teaching materials because it can deliver information to a wide range of viewers for free, can be viewed repeatedly, and can improve understanding through the use of multimedia including text, images, and sound (Honda 2000).The video creation period was from June to October 2020.Then, the video was presented during the period in which Science Agora was held in 2020 and the following week, that is, from November 15 to 29, 2020.

Selection of content items
The video consisted of two parts; the rst was an introduction while the second was a lecture.The content items of the lecture were selected based on the "Recommendations on the Information Transfer Process in Genomic Medicine" by Japan Agency for Medical Research and Development (AMED) (Japan Agency for Medical Research and Development 2019a) and previous studies (Sogawa et al. 2019).
The ten items were as follows: heredity, genes, causes of cancer, relationship between cancer and genes, medical treatment using genetic information, family tree, hereditary cancer, genetic counseling, certi ed genetic counselor, and summary.Based on previous studies (Sogawa et al. 2019), we created eight main statements that included the key points for learning about personalized cancer medicine (Table 1).The contents were reviewed by the project staff.
Table 1 Eight main statements on learning about cancer genomics Items 1. Cancer is a disease caused by genetic mutation.
2. Some healthy people are born with a tendency to develop cancer.
3. Approximately 5-15% of people diagnosed with cancer are born with a predisposition to cancer.4.Even if you are "naturally susceptible to cancer," it does not mean that you will de nitely get cancer.
5. If one of your parents is "born with a cancer-prone constitutional DNA," there is a 50% chance that you will inherit the constitutional DNA.
6.When considering hereditary cancer, the age at which the disease began is also important.

7.
A "certi ed genetic counselor" can be consulted for advice on genetic issues.8. Genetic counseling is available to anyone, regardless of whether they have the disease.
We designed the ow of the video so that the viewer could clearly understand these eight main statements.We nally completed the video containing the 18-minute lecture with 59 slides on genetics and hereditary cancer, following the 3-minute introductory remarks.The video is available on the website of Science Agora 2020 (Science Agora 2020 sponsored by Japan Science and Technology Agency 2020).

target group
The respondents were participants in Science Agora 2020 who watched the YouTube video of "Genetic Cafe."

Questionnaire survey procedure
The web questionnaire survey was conducted using a Google form from November 15 to 29, 2020 (the entire period of Science Agora 2020 and the following week).In this cross-sectional study, the participants agreed with the research purpose and completed a self-administered questionnaire survey after watching the video.

Selection of questions
The original draft of the Web questionnaire was based on previous research (Sogawa et al. 2019;Haga et al. 2013; Kihara and Kihara 2014).To evaluate whether the video viewers correctly understood the content of the video, we created a questionnaire consisting of ve basic attribute items, eight knowledge questions, nine awareness questions, and one description question.The questionnaire consisted of a total of 23 items.Among them, four items of basic attributes, eight items of knowledge, and eight items of awareness problems were set as questions that must be answered.The questions other than the openended items were asked using the multiple-choice method or the rating scale method.

Ethical Considerations
This study was conducted with the approval of the Research Ethics Review Committee of the Department of Medical Sciences, Okayama University (Lab.No. 2003-038).A check box for consent to participate in the study was provided in the web questionnaire.

Analysis
The total number of the video views was obtained from YouTube analytics.
The results of the free description were analyzed qualitatively by thematic analysis, considering references in previous studies (Kihara and Kihara 2012).
To increase the credibility and validity of the analysis, triangulation was conducted by the rst author and a nurse with experience in qualitative research, and the considerations were examined.

Results
3.1 Attributes of the target audience (Table 2).
From November 15 to 29, 2020, the total number of views of the video on the Genetic Cafe channel was 343, the estimated number of viewers (unique viewers) was 133, the number of respondents was 35, and the response rate was 26.3%.The respondents agreed with the purpose of the research and provided answers regarding the required items.Therefore, there were no analysis exclusions.Table 2 shows the respondents' attributes, including gender, age, occupation, and self-learning experience regarding heredity.3 shows the results for the video evaluation by the respondents.All respondents understood that "even if they had a hereditary cancer or were born with a predisposition to develop cancer, they would not necessarily develop cancer."They also correctly recognized that they could consult a certi ed genetic counselor about their genetics.However, the percentage of correct answers to questions about hereditary cancer rates was lower than that for other questions.After high school graduation 1 2.9 3.3 Learning media for genetic and cancer education (Table 4) The respondents listed online tools, such as websites and videos, as well as various media types, such as manga, books, and lectures, for obtaining information about genetics and hereditary cancer.

Discussion
More than 90% of the respondents from various backgrounds answered that the video was easy to understand and useful for those who are interested in genetics and hereditary cancer.Additionally, most respondents realized the importance of early education on genetics and cancer.We found that most respondents understood essential information on genetics and hereditary cancer and that they could appropriately judge when and how to enlighten citizens on genetics and hereditary cancer.
In this study, 28.6% and 42.9% of respondents said it would be appropriate to start learning about genetics and cancer in upper elementary school and middle school, respectively.
Our results are in line with those of several previous studies (Watanabe et al. 2019) that have described the effectiveness of education for upper elementary school and junior high school students.Other studies (Campbell et al. 2014) have shown that early education interventions have a strong effect on prevention and health promotion behaviors in the future.
The extant literature points out that the implementation of cancer education at school can bring about a ripple effect on the guardians, leading not only to cancer prevention for the students themselves, but also to educational effects for their families (Yokoyama et al. 2018).Therefore, it is important for medical and educational institutions to work together to promote genetics education in schools.
Furthermore, in this study, in terms of learning media, the respondents from all age groups ranked videos highly and also mentioned websites and video-sharing platforms, such as YouTube.The results of the current study support those of previous studies (Huang and Penson 2008;Prochaska al. 2017) showing that social media and mobile health technologies, including the Internet, play an important role in nding health information for cancer prevention and treatment.In addition, the existing literature highlights that cancer genetics education using videos is useful for people with visual impairment or those who cannot read for some reason (Boudreault et al. 2018).In summary, according to the respondents in the current study, effective enlightenment activities should incorporate the use of educational videos.

Limitations
This study has the following limitations.First, we were not able to compare the results before and after watching the YouTube video; thus, we could not verify whether the respondents had knowledge of the existence and mechanism of hereditary cancer before watching the video.However, since all respondents answered correctly, it is unlikely that the YouTube video had a negative impact on them.Hence, future research should verify the knowledge and understanding of the respondents before watching the video.
Second, the Science Agora 2020 event is designed for the general public.However, the respondents included certain categories, such as medical professionals, teachers, graduate students, and researchers, who are expected to be particularly interested in science education.Therefore, it is necessary for future research to expand the target audience to examine whether the results of this study are useful for other ordinary citizens.

Conclusion
This study clari es that effective enlightenment activities should incorporate the use of educational videos.The study's ndings highlight the importance of providing opportunities by schools and other educational institutions to students to learn about genetics and cancer, especially for elementary, junior high, and high school students, using learning media such as videos that match individual characteristics.In the future, it is hoped that interest in genomic medicine and genetics, especially cancer, will increase through various media, leading to more effective health management and cancer prevention.

Ethics approval
The questionnaire and methodology for this study was approved by the Research Ethics Review Committee of the Department of Medical Sciences, Okayama University (Lab.No. 2003-038).
Consent to participate: Informed consent was obtained from all individual participants included in the study.
Consent to publish: Informed consent was obtained from all individual participants included in the study.

Table 2
3.2 Evaluation of the video and knowledge and understanding of content Table

Table 4
Responses to suggestions for effective educational activities What type of media would you like to use to obtain the information you got from this lecture?(Multiple answers allowed)