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新加坡马来族穆斯林、华族和印度族对参与基因研究的担忧:一项焦点小组研究

Concerns over participation in genetic research among Malay-Muslims, Chinese and Indians in Singapore: a focus group study.

作者信息

Wong Mee Lian, Chia Kee Seng, Wee Sharon, Chia Sin Eng, Lee Jeannette, Koh Woon Puay, Shen Han Ming, Thumboo Julian, Sofjan Dicky

机构信息

Department of Community, Occupational and Family Medicine, Faculty of Medicine (MD3), National University Hospital, Singapore, Singapore.

出版信息

Community Genet. 2004;7(1):44-54. doi: 10.1159/000080303.

DOI:10.1159/000080303
PMID:15475670
Abstract

OBJECTIVE

This study was aimed at exploring and comparing peoples' concerns over donation of blood specimens for genetic research across three ethnic groups in Singapore: Malay-Muslims, Chinese and Indians.

METHODS

We conducted 12 focus group sessions among 98 participants with 7-10 in each group.

RESULTS

Concerns over donation of blood specimens for genetic research were diverse, with all ethnic groups expressing anxiety about breach of confidentiality, finding out that they have a disease and misuse of research for cloning. Other concerns included fear of pain, blood and needle pricks and misconceptions of adverse health effects such as weight gain from donating blood specimens. Malay-Muslims were generally concerned about the selection process, potential racial discrimination, and religious beliefs regarding blood storage while Chinese and Indians were concerned about giving blood to strangers and being inconvenienced by participating in research.

CONCLUSION

Programmes to promote community participation in genetic research should address the diverse ethnic concerns, design ethnic-sensitive messages and involve the community.

摘要

目的

本研究旨在探索和比较新加坡三个族群(马来穆斯林、华人和印度人)对为基因研究捐献血样的担忧。

方法

我们组织了12场焦点小组会议,共有98名参与者,每组7至10人。

结果

对为基因研究捐献血样的担忧多种多样,所有族群都对保密性被侵犯、发现自己患有疾病以及研究被滥用于克隆表示焦虑。其他担忧包括害怕疼痛、血液和针刺,以及对诸如因捐献血样而体重增加等不良健康影响的误解。马来穆斯林普遍关心选择过程、潜在的种族歧视以及关于血液储存的宗教信仰,而华人和印度人则担心将血样捐给陌生人以及参与研究带来不便。

结论

促进社区参与基因研究的项目应解决不同族群的担忧,设计对族群敏感的信息并让社区参与进来。

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