期刊
DEVELOPING WORLD BIOETHICS
卷 -, 期 -, 页码 -出版社
WILEY
DOI: 10.1111/dewb.12435
关键词
developing countries; genetic data; genomic research; human genome; Malaysia; research ethics
This study aims to explore the development of human genomics research in Malaysia in relation to ethical issues. The researchers and research ethics committee members expressed concerns over the absence of a clear ethical and regulatory framework at the national level, but the study suggests that international guidelines and training can help ensure the ethical development of genomics research.
Even though there is a significant amount of scholarly work examining the ethical issues surrounding human genomics research, little is known about its footing in Malaysia. This study aims to explore the experience of local researchers and research ethics committee (REC) members in developing it in Malaysia. In-depth interviews were conducted from April to May 2021, and the data were thematically analysed. In advancing this technology, both genomics researchers and REC members have concerns over how this research is being developed in the country especially the absence of a clear ethical and regulatory framework at the national level as a guidance. However, this study argues that it is not a salient issue as there are international guidelines in existence and both researchers and RECs will benefit from a training on the guidelines to ensure genomics research can be developed in an ethical manner.
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