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本文引用的文献

1
Clinical Genetics in Japan: Efforts of Human Genetics Societies and Related Organizations.日本的临床遗传学:人类遗传学会及相关组织的努力。
JMA J. 2020 Jan 15;3(1):1-8. doi: 10.31662/jmaj.2019-0019. Epub 2019 Sep 10.
2
Precision Oncology and the Universal Health Coverage System in Japan.精准肿瘤学与日本的全民健康覆盖体系
JCO Precis Oncol. 2019 Dec 11;3. doi: 10.1200/PO.19.00291. eCollection 2019.
3
Ethical and professional challenges encountered by Japanese healthcare professionals who provide genetic counseling services.日本提供遗传咨询服务的医疗保健专业人员所面临的伦理和专业挑战。
J Genet Couns. 2020 Dec;29(6):1004-1014. doi: 10.1002/jgc4.1225. Epub 2020 Feb 6.
4
A proposal on the first Japanese practical guidance for the return of individual genomic results in research settings.在研究环境下,个体基因组研究结果返还的第一份日本实用指南提案。
J Hum Genet. 2020 Mar;65(3):251-261. doi: 10.1038/s10038-019-0697-y. Epub 2019 Dec 23.
5
Developing a national certification pathway for genetic counselors in Sweden-a short report.为瑞典遗传咨询师制定国家认证途径——简短报告
J Community Genet. 2020 Jan;11(1):113-117. doi: 10.1007/s12687-019-00426-7. Epub 2019 Jun 1.
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World congress on genetic counselling.
Eur J Med Genet. 2019 May;62(5):287. doi: 10.1016/j.ejmg.2019.04.011. Epub 2019 Apr 17.
7
Point of View: An evolution from genetic counselling to genomic counselling.观点:从遗传咨询到基因组咨询的演变
Eur J Med Genet. 2019 May;62(5):288-289. doi: 10.1016/j.ejmg.2019.04.010. Epub 2019 Apr 13.
8
The rise of the genetic counseling profession in China.中国遗传咨询行业的兴起。
Am J Med Genet C Semin Med Genet. 2019 Jun;181(2):170-176. doi: 10.1002/ajmg.c.31693. Epub 2019 Mar 12.
9
Genetic counselors' scope of practice and challenges in genetic counseling services in Saudi Arabia.沙特阿拉伯遗传咨询服务中遗传咨询师的执业范围及挑战
Int J Pediatr Adolesc Med. 2016 Mar;3(1):1-6. doi: 10.1016/j.ijpam.2015.12.002. Epub 2016 Jan 28.
10
The Global State of the Genetic Counseling Profession.全球遗传咨询专业状况。
Eur J Hum Genet. 2019 Feb;27(2):183-197. doi: 10.1038/s41431-018-0252-x. Epub 2018 Oct 5.

日本围绕遗传咨询师的机构与社会问题:当前挑战及对全球社会的影响

Institutional and Social Issues Surrounding Genetic Counselors in Japan: Current Challenges and Implications for the Global Community.

作者信息

Aizawa Yayoi, Watanabe Atsushi, Kato Kazuto

机构信息

Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Suita, Japan.

Division of Clinical Genetics, Kanazawa University Hospital, Kanazawa, Japan.

出版信息

Front Genet. 2021 Apr 13;12:646177. doi: 10.3389/fgene.2021.646177. eCollection 2021.

DOI:10.3389/fgene.2021.646177
PMID:33927749
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8076856/
Abstract

In recent years, genetic counseling has started playing a major role in the field of genomic medicine. There are currently about 7,000 genetic counselors in more than 28 countries, with 267 certified genetic counselors in Japan alone (about 2 per million population, as of April 2020). While the rapid advancement of genomic medicine has expanded this field, the challenges genetic counselors face are also evolving. This article aims to provide an overview of the institutional and social issues surrounding genetic counselors in Japan and discuss implications for the global community. In Japan, with the rapid changes in genomic medicine and the establishment of a delivery mechanism within the healthcare system, several issues need to be discussed. First, many genetic testing, counseling, and preventive healthcare programs are not covered by public health insurance. Second, reducing human resource shortages for genetic counseling is an urgent issue. Third, the lack of a national qualification in the profession is critically important issue in the field. Fourth, research on the role and value of genetic counselors is still limited. To address these issues, discussions among relevant stakeholders, including genetic counselors, professionals in genomic medicine, and lawmakers, are necessary. Additionally, we believe that research by genetic counselors to evaluate and improve their practice and examine institutional and social issues is crucial for developing their profession's activities and delivering high-quality healthcare to many people. To establish the position and role of the relatively new profession of genetic counselor, sharing information and collaborating on institutional and social challenges faced by genetic counselors globally will be beneficial.

摘要

近年来,遗传咨询在基因组医学领域开始发挥重要作用。目前,28 个以上国家约有 7000 名遗传咨询师,仅日本就有 267 名认证遗传咨询师(截至 2020 年 4 月,约为每百万人中有 2 名)。虽然基因组医学的快速发展扩大了这一领域,但遗传咨询师面临的挑战也在不断演变。本文旨在概述日本围绕遗传咨询师的制度和社会问题,并探讨对全球社会的影响。在日本,随着基因组医学的快速变化以及医疗保健系统中提供机制的建立,有几个问题需要讨论。首先,许多基因检测、咨询和预防性医疗保健项目不在公共医疗保险覆盖范围内。其次,减少遗传咨询方面的人力资源短缺是一个紧迫问题。第三,该职业缺乏国家资格认证是该领域的一个极其重要的问题。第四,关于遗传咨询师的作用和价值的研究仍然有限。为解决这些问题,包括遗传咨询师、基因组医学专业人员和立法者在内的相关利益攸关方之间的讨论是必要的。此外,我们认为遗传咨询师进行研究以评估和改进他们的实践,并审视制度和社会问题,对于开展他们职业的活动以及为许多人提供高质量医疗保健至关重要。为确立相对较新的遗传咨询师职业的地位和作用,分享信息并就全球遗传咨询师面临的制度和社会挑战开展合作将是有益的。