從研究自由之觀點論基因研究的社群參與

Exploring Community Engagement in Genetic Research from the Perspective of Academic Freedom

陳仲嶙(Chung-Lin Chen)

《臺北大學法學論叢》 71期 (2009/09) Pp. 1-40

https://doi.org/10.6774/TULR.200909.0001

摘要

以人群爲基礎的基因研究密集地成爲研究對象，已超過十年；聚焦於種族或族群之人群的研究，也早已展開。在我國，受到基因研究特別注目的族群，當屬原住民族。因爲原住民族的弱勢地位，族群基因研究因此升起獨特的倫理、法律與社會議題，也因此產生對少數族群在族群基因研究中參與角色之關切。
不過，國內外社群參與之相關論述，大大地忽略了研究自由／言論自由之角色。研究自由不僅表徵一項應被考量的利益，言論自由之精神與論述亦將提供社群參與之制度建構重要的指引。由於目前在基因研究之社群參與議題上，欠缺研究自由／言論自由觀點之探討，本文期待能稍稍彌補此一空缺。
本文認爲，若國家要求研究計畫必須經過族群同意，將是一種對言論的事前審查，形成對研究自由的重大干預，恐有違憲的嫌疑；另一方面，經過良好設計的社群諮詢，則可能有助於不同意見之交換與思辯，而促成言論自由精神的更深刻實踐。本文建議，對於族群基因研究，可透過倫理委員會及族群諮詢委員會在組織及權責上的改革與創設，去型塑出適當的社群諮詢機制。

關鍵字

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

並列摘要

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.

並列關鍵字

Community Engagement ； Community Consent ； Group Consent ； Genetic Research ； Human Tissue Research ； Academic Freedom ； Freedom of Speech ； Freedom of Expression ； IRB ； Aborigines

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