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美国东南亚和东亚女性对产前遗传咨询、产前基因检测及终止妊娠的态度

Attitudes Towards Prenatal Genetic Counseling, Prenatal Genetic Testing, and Termination of Pregnancy among Southeast and East Asian Women in the United States.

作者信息

Tsai Ginger J, Cameron Carrie A, Czerwinski Jennifer L, Mendez-Figueroa Hector, Peterson Susan K, Noblin Sarah Jane

机构信息

Genetic Counseling Program, The University of Texas Graduate School of Biomedical Sciences at Houston, Houston, TX, USA.

Department of Internal Medicine, Division of Medical Genetics, McGovern Medical School at The University of Texas Health Science Center at Houston, Houston, TX, USA.

出版信息

J Genet Couns. 2017 Oct;26(5):1041-1058. doi: 10.1007/s10897-017-0084-9. Epub 2017 Mar 2.

Abstract

Recognizing the heterogeneity of the Asian population with regards to acculturation, education, health awareness, and cultural values is vital for tailoring culturally sensitive and appropriate care. Prior studies show that cultural values influence perceptions of genetics within Asian populations. The reputation of the family unit factors into decisions such as pregnancy termination and disclosure of family medical history, and the nondirective model of American genetic counseling may conflict with the historical Asian model of paternalistic health care. Previous studies also provide conflicting evidence regarding correlations between education, acculturation, age, and awareness and perceptions of genetic testing. The aims of this study were to describe attitudes towards prenatal genetics among Southeast and East Asian women living in the United States for varying amounts of time and to explore sociocultural factors influencing those attitudes. Twenty-three Asian women who were members of Asian cultural organizations in the United States were interviewed via telephone about their attitudes towards prenatal genetic counseling, prenatal genetic testing, and termination of pregnancy. Responses were transcribed and coded for common themes using a thematic analysis approach. Four major themes emerged. In general, participants: (1) had diverse expectations for genetic counselors; (2) tended to weigh risks and benefits with regards to genetic testing decisions; (3) had mixed views on termination for lethal and non-lethal genetic conditions; and (4) identified cultural factors which influenced testing and termination such as lack of available resources, societal shame and stigma, and family pressure. These findings may allow prenatal genetic counselors to gain a richer, more nuanced understanding of their Asian patients and to offer culturally tailored prenatal genetic counseling.

摘要

认识到亚洲人群在文化适应、教育、健康意识和文化价值观方面的异质性,对于提供具有文化敏感性和适当性的护理至关重要。先前的研究表明,文化价值观会影响亚洲人群对遗传学的认知。家庭单位的声誉会影响诸如终止妊娠和披露家族病史等决策,而美国遗传咨询的非指导性模式可能与亚洲家长式医疗保健的历史模式相冲突。先前的研究还提供了关于教育、文化适应、年龄以及基因检测意识和认知之间相关性的相互矛盾的证据。本研究的目的是描述在美国生活不同时间的东南亚和东亚女性对产前遗传学的态度,并探讨影响这些态度的社会文化因素。通过电话采访了23名在美国亚洲文化组织中任职的亚洲女性,了解她们对产前遗传咨询、产前基因检测和终止妊娠的态度。对回答进行转录,并采用主题分析方法对常见主题进行编码。出现了四个主要主题。总体而言,参与者:(1)对遗传咨询师有不同的期望;(2)在基因检测决策方面倾向于权衡风险和益处;(3)对因致命和非致命基因状况而终止妊娠有不同看法;(4)确定了影响检测和终止妊娠的文化因素,如缺乏可用资源、社会羞耻感和污名以及家庭压力。这些发现可能使产前遗传咨询师对其亚洲患者有更丰富、更细致入微的了解,并提供符合文化特点的产前遗传咨询。

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