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识别并应对瓦哈卡州原住民中的遗传咨询挑战——加利福尼亚中央谷地一个中心对两个移民农场工人家庭的经验

Identifying and Addressing Genetic Counseling Challenges among Indigenous People of Oaxaca-One Center's Experience with Two Immigrant Farmworker Families in the Central Valley of California.

作者信息

Shen Joseph J, Carmichael Jason, Vásquez Santos Leoncio

机构信息

Division of Genetics, Department of Pediatrics, University of California, San Francisco - Fresno, 290 N. Wayte Lane, Fresno, CA, 93701, USA.

Medical Genetics and Metabolism, Valley Children's Hospital, Madera, CA, USA.

出版信息

J Genet Couns. 2018 Aug;27(4):996-1004. doi: 10.1007/s10897-018-0221-0. Epub 2018 Feb 3.

Abstract

An important aspect of genetic counseling is the recognition of and adaptation to the socio-cultural uniqueness of the different populations that a genetics clinic serves. The Central Valley of California is home to a large population from Mexico, with a significant proportion of indigenous ancestry originating from the state of Oaxaca. We report on our experience with two families of this community-one extended family with an early lethal inborn error of metabolism and the other with a chronic disfiguring form of ichthyosis. We identified multiple important factors that needed to be considered, including the matching of language dialects, adaptation to different social interaction conventions, acknowledgement of traditional medicine beliefs, and effective transmission of genetic terms and concepts, all of which should be incorporated into the interactions with these families when aiming to provide comprehensive genetic counseling.

摘要

遗传咨询的一个重要方面是认识并适应遗传学诊所所服务的不同人群的社会文化独特性。加利福尼亚州的中央谷地居住着大量来自墨西哥的人口,其中很大一部分原住民血统来自瓦哈卡州。我们报告了我们在这个社区的两个家庭的经历——一个大家庭患有早期致死性代谢先天性缺陷,另一个家庭患有慢性毁容性鱼鳞病。我们确定了多个需要考虑的重要因素,包括方言匹配、适应不同的社交互动惯例、承认传统医学观念以及有效地传递遗传学术语和概念。在旨在提供全面的遗传咨询时,所有这些因素都应纳入与这些家庭的互动中。

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