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马来西亚的遗传咨询服务与培训项目的开展

Genetic counseling services and development of training programs in Malaysia.

作者信息

Lee Juliana Mei-Har, Thong Meow-Keong

机构信息

Department of Medical Social Work, University Malaya Medical Centre, 59100, Kuala Lumpur, Malaysia.

出版信息

J Genet Couns. 2013 Dec;22(6):911-6. doi: 10.1007/s10897-013-9589-z. Epub 2013 Apr 25.

DOI:10.1007/s10897-013-9589-z
PMID:23615969
Abstract

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.

摘要

发展中国家迫切需要遗传咨询服务。在马来西亚,1994年在吉隆坡的一家主要教学医院引入了首个医学遗传服务。二十年后,马来西亚四个主要医学遗传服务中心提供了遗传咨询、基因检测和诊断服务,涵盖儿科疾病和成人遗传性疾病,医学遗传服务得到了改善。三级医疗中心和私立医疗机构提供产前诊断服务和辅助生殖技术。积极的进展包括政府认可临床遗传学为一个亚专业,增加了对遗传学服务的资金投入,制定了医学伦理准则,并成立了支持小组。然而,该国缺乏合格的遗传咨询师。已向政策制定者提出了开设遗传咨询课程的建议。遇到的挑战包括资源有限、公众意识淡薄、宗教和社会问题等伦理困境,以及遗传健康专业人员尤其是遗传咨询师不足。

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