原住民與基因研究者對於原住民基因研究的認知差異

Translated title of the contribution: Conceptual Differences between Researchers and Subjects in Genetic Research on Taiwan Indigenes

Shu-Juo Chen, Chih-Hsuan Chen, Hung-Yu Ru, Mona Watan, Chi-Wan Lai

Research output: Contribution to journalArticle

Abstract

The world's indigenous peoples have contributed vast amounts of data in the development of genetic research. However, there have been some ethical controversies in such studies done in many countries. Therefore, we embarked upon this study to clarify the conceptual differences between researchers and subjects in the genetic research on Taiwan Indigenes, and discuss how to solve these differences in the future studies in this important area. In-depth interviews and questionnaire survey methods were utilized to investigate the understanding and the concept of, and the attitude toward genetics among indigenes, local health care workers, and genetic researchers. Indigenes have very vague concept of genetics; but they feel that an informed consent is necessary before collecting their samples. Indigenes agree that researchers should have more understanding of their culture and living environment before the research can generate more credible results, and they wish researcher can also share study results with them before publication, in order to avoid any negative social impact upon their people. Local health care workers in indigenous area prefer to be informed of the research studies in advance, and they feel a better coordination can avoid multiple collections of samples, and unjustified redundancy. In contrast, genetic researchers are more interested in the research value, but they still agree that an ethic code is necessary to protect the human right of individual donor. However, they are conservative for the idea of group consent. Conclusion: How to achieve a proper balance between medical research in genetics and respect for the basic human rights of worldwide indigenes is a topic that urgently needs to be addressed. A group consent proved by the Community Review Board (CRB) of indigenes is a good mechanism to protect the human right of Taiwan Indigenes.
Translated title of the contributionConceptual Differences between Researchers and Subjects in Genetic Research on Taiwan Indigenes
Original languageTraditional Chinese
Pages (from-to)29-62
Number of pages34
Journal台灣原住民族研究季刊
Volume3
Issue number1
Publication statusPublished - 2010
Externally publishedYes

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