Concerns over Participation in Genetic Research among Malay-Muslims, Chinese and Indians in Singapore: A Focus Group Study

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.