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從研究自由之觀點論基因研究的社群參與
Journal article

從研究自由之觀點論基因研究的社群參與

仲嶙 陳
臺北大學法學論叢, Vol.71, pp.1-40
2009

Abstract

社群參與;社群同意;群體同意;基因研究;人體組織研究;研究自由;學術自由;言論自由;倫理委員會;原住民族;Community Engagement;Community Consent;Group Consent;Genetic Research;Human Tissue Research;Academic Freedom;Freedom of Speech;Freedom of Expression;IRB;Aborigines

Racial or ethnic communities have been targets of genetic research for a long time. In Taiwan, the communities that particularly attract scientists' attention are Taiwanese Aborigines. Due to the disadvantaged status of Aborigines, genetic research involving Aborigines raises unique ethical, legal, and social issues. Community engagement appears to represent a substantial response to the issues concerning Aborigines. However, the existing discussion regarding community engagement of genetic research largely overlooks the role of academic freedom/freedom of expression. Academic freedom represents critical public interests that should be considered. Moreover, the understanding and discourse of free speech provide valuable guidance to the establishment of community engagement. Due to the lack of the awareness of academic freedom/freedom of expression in current discussion, this article attempts to contribute to the field by approaching community engagement from the perspective of academic freedom/freedom of expression. I argue that the law requiring research proposals to be approved by certain community constitutes a prior restraint of expression and therefore bears heavy suspicion of unconstitutionality; on the other hand, well-designed community consultation may facilitate exchange of ideas and further realize the spirit of free speech. I suggest a community consultation mechanism consisting of reforming IRBs, creating community advisory committees, and prudently arranging respective authority and obligations of these organizations.

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