关于韩国遗传咨询实地经验的定性研究。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY Journal of Genetic Counseling Pub Date : 2024-10-23 DOI:10.1002/jgc4.1987
In Hee Choi, JeongYun Park, Haeng-Mi Son
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引用次数: 0

摘要

在韩国,遗传咨询服务始于 20 世纪 90 年代初开设的遗传诊所;近年来,对这些服务的需求不断增加。然而,在韩国国家医疗保险体系中,遗传咨询并不是一项官方认可的医疗服务;此外,其认证也不被承认为医疗资格。为了明确遗传咨询师的角色和意义,本研究考察了他们的实地经验。为此,我们对 11 名认证遗传咨询师、6 名高级执业护士和 4 名普通护士进行了焦点小组访谈。我们对访谈内容进行了逐字记录,并采用主题分析法对访谈内容进行了研究。我们发现,尽管韩国不承认他们的角色,但参与者履行了他们的责任和主要职责。此外,由于缺乏遗传学和基因组学方面的正规教育,她们在咨询过程中面临着挑战。此外,由于罕见遗传疾病的复杂性,他们在为家庭检测或产前诊断提供决策支持时遇到了法律和伦理方面的难题。不过,他们还是努力学习为罕见遗传病患者及其家庭提供支持所需的专业知识,逐步积累实践经验和专业知识。因此,有必要编写手册、建立制度和改善工作环境,以提供高质量和专业化的遗传咨询。此外,还需要国家的支持,如确定遗传咨询师的固定工资、制定国家资格认证制度、确保专职人员等。
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A qualitative study on the field experience of genetic counseling in Korea.

In Korea, genetic counseling services began with the opening of genetic clinics in the early 1990s; in recent years, demand for these services has increased. However, genetic counseling is not an officially recognized healthcare service under the Korean national health insurance system; further, its certification is not recognized as a medical qualification. To clarify the role and significance of genetic counselors, this study examined their field experiences. To this end, we conducted focus group interviews with 11 certified genetic counselors, six advanced practice nurses, and four regular nurses. The interviews were transcribed verbatim and examined using thematic analysis. We found that even though Korea did not recognize their roles, the participants met their responsibilities and primary duties. In addition, they faced challenges during counseling due to a lack of formal education in genetics and genomics. Moreover, they encountered dilemmas related to the legal and ethical aspects of decision support for family testing or prenatal diagnosis due to the complexity of rare genetic disorders. However, they attempted to acquire the specialized knowledge needed to support patients with rare genetic disorders and their families, gradually developing practical experience and specialized knowledge. Therefore, it is necessary to develop manuals, establish systems, and improve working environments to provide high-quality and specialized genetic counseling. Additionally, there is a need for national support, such as establishing set wages for genetic counselors, developing a national qualification certification system, and securing dedicated personnel.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
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