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迈向癌症遗传咨询与遗传学教育中的文化能力:来自华裔澳大利亚人的经验教训。

Toward cultural competence in cancer genetic counseling and genetics education: lessons learned from Chinese-Australians.

作者信息

Barlow-Stewart Kristine, Yeo Soo See, Meiser Bettina, Goldstein David, Tucker Kathy, Eisenbruch Maurice

机构信息

Center for Genetics Education, Bldg. 36, Royal North Shore Hospital, St. Leonards, NSW 2065, Australia.

出版信息

Genet Med. 2006 Jan;8(1):24-32. doi: 10.1097/01.gim.0000195884.86201.a0.

DOI:10.1097/01.gim.0000195884.86201.a0
PMID:16418596
Abstract

PURPOSE

In societies such as Australia with a strong multicultural makeup, culturally determined attitudes to genetics, testing, and counseling may be incompatible with current genetics service provision.

METHODS

An ethnographic investigation using purposive sampling to increase subject diversity was used to explore the range of beliefs about kinship and inheritance using Chinese-Australians as a case. Participants comprised a sample of 15 Chinese-Australians who had been recruited through several community-based organizations.

RESULTS

The level of acculturation does not correlate with holding beliefs about inheritance, kinship, and causes of hereditary cancer that are based on "Western" biomedical or traditional concepts. Mismatch between beliefs may exist within families that can impact participation in cancer genetic testing. Family history taking that underpins the surveillance, management, and referral to genetic counseling where there is a strong family history of breast, ovarian, or colorectal cancer can also be impacted unless recognition is made of the patrilineal concept of kinship prevalent in this Chinese-Australian community.

CONCLUSION

This community-based study confirmed and validated views and beliefs on inheritance and kinship and inherited cancer attributed to senior family members by Chinese-Australians who attended cancer genetic counseling. Barriers to communication can occur where there may be incompatibility within the family between "Western" and traditional beliefs. The findings were used to develop strategies for culturally competent cancer genetic counseling with Australian-Chinese patients. These include nonjudgmental incorporation of their belief systems into the genetic counseling process and avoidance of stereotyping. They have also influenced the development of genetics education materials to optimize family history taking.

摘要

目的

在像澳大利亚这样具有多元文化构成的社会中,文化决定的对遗传学、检测及咨询的态度可能与当前的遗传学服务提供不相容。

方法

采用立意抽样以增加受试者多样性的人种学调查,以华裔澳大利亚人为例来探索关于亲属关系和遗传的一系列信念。参与者包括通过几个社区组织招募的15名华裔澳大利亚人样本。

结果

文化适应程度与基于“西方”生物医学或传统概念的关于遗传、亲属关系和遗传性癌症病因的信念无关。家庭内部可能存在信念上的不匹配,这会影响癌症基因检测的参与度。除非认识到在这个华裔澳大利亚社区中普遍存在的父系亲属关系概念,否则作为乳腺癌、卵巢癌或结直肠癌家族病史明显时进行监测、管理及转介至遗传咨询基础的家族史采集也会受到影响。

结论

这项基于社区的研究证实并验证了参加癌症遗传咨询的华裔澳大利亚人对遗传、亲属关系以及归因于老年家庭成员的遗传性癌症的观点和信念。当家庭内部“西方”信念与传统信念可能不相容时,可能会出现沟通障碍。这些发现被用于制定针对华裔澳大利亚患者的具有文化胜任力的癌症遗传咨询策略。这些策略包括在遗传咨询过程中无偏见地纳入他们的信念体系并避免刻板印象。它们还影响了遗传学教育材料的开发,以优化家族史采集。

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