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义务教育中传授的有效遗传咨询基础知识:对教科书中描述的定性研究

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

作者信息

Sakai Eri, Yamada Takahiro, Funaki Tomomi, Iwakuma Miho, Osawa Harumo, Morimoto Kana, Kosugi Shinji

机构信息

Medical Ethics/Medical Genetics, School of Public, Kyoto University Graduate School of Medicine, Yoshidakonoe-cho, Sakyo-ku, Kyoto, Kyoto, 606-8501, Japan.

Kyoto Prefectural University of Medicine Graduate School, Kyoto, Japan.

出版信息

J Community Genet. 2023 Jun;14(3):263-274. doi: 10.1007/s12687-023-00641-3. Epub 2023 Feb 28.

DOI:10.1007/s12687-023-00641-3
PMID:36853589
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10272030/
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.

摘要

在遗传咨询中,必须以服务对象和公众能够理解的方式提供信息,以确保自主做出决策。为实现这一点,我们必须评估公众对遗传学的了解程度。为了在遗传咨询前确定服务对象原有的知识水平,我们探究了日本义务教育中所教授的与遗传咨询相关的基础知识。我们开展了一项定性研究。我们挑选了50本在日本半数以上地区使用过的义务教育教科书(日语、社会研究、科学、健康与体育、技术与家政、道德和生活)。文本数据采用定性内容分析法进行分析,定量数据则用于方法学三角互证分析。从符合以下标准的内容中生成代码、子类别和类别:临床遗传学家官方教科书中包含的内容、源于此类与遗传咨询相关描述的内容,以及与遗传学明显相关的内容。在这50本教科书中,33本包含了有关遗传咨询的基础知识。定性内容分析确定了四个主要类别:(1)遗传学基础,(2)疾病的理解与控制,(3)实现和谐社会的努力与障碍,以及(4)技术与人类。我们发现,与遗传咨询相关的基础知识在义务教育中直接或间接地得到了传授。我们的研究结果是了解服务对象知识基线的重要资源,将有助于开展有效的遗传咨询。

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本文引用的文献

1
Attitudes of clinical geneticists and certified genetic counselors to genome editing and its clinical applications: A nation-wide questionnaire survey in Japan.临床遗传学家和认证遗传咨询师对基因组编辑及其临床应用的态度:日本全国范围内的问卷调查。
J Hum Genet. 2019 Sep;64(9):945-954. doi: 10.1038/s10038-019-0635-z. Epub 2019 Jul 5.
2
Standards for reporting qualitative research: a synthesis of recommendations.报告定性研究的标准:建议的综合。
Acad Med. 2014 Sep;89(9):1245-51. doi: 10.1097/ACM.0000000000000388.
3
Misunderstandings concerning genetics among patients confronting genetic disease.面对遗传性疾病的患者对遗传学存在误解。
J Genet Couns. 2010 Oct;19(5):430-46. doi: 10.1007/s10897-010-9307-z. Epub 2010 May 29.
4
Patients' resistance to risk information in genetic counseling for BRCA1/2.患者在BRCA1/2基因咨询中对风险信息的抵触情绪。
Arch Intern Med. 2005 Mar 14;165(5):523-9. doi: 10.1001/archinte.165.5.523.
5
Genetic counseling gone awry: miscommunication between prenatal genetic service providers and Mexican-origin clients.走入歧途的遗传咨询:产前遗传服务提供者与墨西哥裔客户之间的沟通不畅
Soc Sci Med. 2003 May;56(9):1933-46. doi: 10.1016/s0277-9536(02)00214-9.