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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.

DOI:10.1007/s10897-018-0221-0
PMID:29397479
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6061092/
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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本文引用的文献

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Surviving the Distance: The Transnational Utilization of Traditional Medicine Among Oaxacan Migrants in the US.跨越距离生存:美国瓦哈卡移民对传统医学的跨国利用
J Immigr Minor Health. 2016 Oct;18(5):1190-1198. doi: 10.1007/s10903-015-0245-6.
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Reproductive Genetic Counseling to Asian-Pacific and Latin American Immigrants.为亚太和拉丁美洲移民提供生殖遗传咨询。
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Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals.澳大利亚原住民的遗传咨询:遗传健康专业人员视角的探索性研究
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5
Harlequin Ichthyosis among the Navajo: Counseling issues.纳瓦霍人中的丑角鱼鳞病:咨询问题
J Genet Couns. 1993 Mar;2(1):3-8. doi: 10.1007/BF00962555.
6
On the development of speech resources for the Mixtec language.关于米斯特克语语音资源的开发。
ScientificWorldJournal. 2013 Apr 16;2013:170649. doi: 10.1155/2013/170649. Print 2013.
7
Understanding of genetic inheritance among Xhosa-speaking caretakers of children with hemophilia.对科萨语系血友病患儿照料者间基因遗传情况的理解。
J Genet Couns. 2012 Oct;21(5):726-40. doi: 10.1007/s10897-012-9495-9. Epub 2012 Mar 10.
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Concurrent use of cultural health practices and Western medicine during pregnancy: exploring the Mexican experience in the United States.孕期文化健康习俗与西医的同时使用:探索美国墨西哥人的经历。
J Genet Couns. 2011 Dec;20(6):609-24. doi: 10.1007/s10897-011-9387-4. Epub 2011 Jul 16.
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