Original Paper Community Genet 2004;7:44–54 DOI: 10.1159/000080303 Concerns over Participation in Genetic Research among Malay-Muslims, Chinese and Indians in Singapore: A Focus Group Study Mee Lian Wong a Kee Seng Chia a Sharon Wee a Sin Eng Chia a Jeannette Lee a Woon Puay Koh a Han Ming Shen a Julian Thumboo b Dicky Sofjan c a Department of Community, Occupational and Family Medicine, Faculty of Medicine (MD3), and b Department of Medicine, Faculty of Medicine, National University Hospital, and c Department of Political Science, Faculty of Arts and Social Science (AS1), National University of Singapore, Singapore, Singapore Associate Prof. Dr. Wong Mee Lian Department of Community, Occupational and Family Medicine, Faculty of Medicine Faculty of Medicine MD3, National University of Singapore 16 Medical Drive, Singapore 117597 (Singapore) Tel. +65 8744965, Fax +65 7791489, E-Mail cofwml@nus.edu.sg ABC Fax + 41 61 306 12 34 E-Mail karger@karger.ch www.karger.com © 2004 S. Karger AG, Basel 1422–2795/04/0071–0044$21.00/0 Accessible online at: www.karger.com/cmg Key Words Concerns W Ethnicity W Focus groups W Genetic research Abstract Objective: This study was aimed at exploring and com- paring peoples’ concerns over donation of blood speci- mens for genetic research across three ethnic groups in Singapore: Malay-Muslims, Chinese and Indians. Meth- ods: 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 be- liefs regarding blood storage while Chinese and Indians were concerned about giving blood to strangers and being inconvenienced by participating in research. Con- clusion: Programmes to promote community participa- tion in genetic research should address the diverse eth- nic concerns, design ethnic-sensitive messages and in- volve the community. Copyright © 2004 S. Karger AG, Basel Introduction Population-based studies to determine gene variants across ethnic groups will lead to better understanding of disease causation, and hence better approaches to treat- ment of human genetic disorders. The success of these studies is dependent on the community’s willingness to donate blood specimens or have them stored for such research. Studies in the United States and Europe have found high levels [1–4] of willingness ranging from 79 [1] to 93% [3]. No studies have been carried out in Asia to assess peo- ple’s willingness to donate blood specimens specifically for genetic research. A survey to assess patients’ willing- ness to have their residual blood used for medical research was carried out in a cancer centre hospital in Japan in 1997 [5]. Only 5% of the 558 patients reported that they would not permit the use of their residual blood for