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論原住民族集體權利保護下之基因研究倫理規範問題 Ethical Issues of Genetic Research Involving Indigenous Peoples:Concerning the Protection of Collective Rights
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| 作者 |
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劉源祥 |
| 學校系所 |
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國立東華大學財經法律研究所 |
| 地點 |
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全臺 全部
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| 研究內容 |
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[ 摘要 ]
原住民族因為居住環境與其它科學上的理由，常成為基因研究者鎖定的研究對象。而從美國「人類基因體多樣性計畫」(Human Genetic Diversity Project)與Havasupai部落糾紛，以及台灣近年所發生的花蓮豐濱噶瑪蘭等案例，我們可以發現原住民族可能遭遇的研究風險或傷害，除了一般認識的歧視或污名化之外，更可能衝擊原住民族的傳統文化價值。
自1947年「紐倫堡規則」(Nuremberg Code)以降的研究倫理規範，皆是以被研究者個人自主權保護為核心；1947年「貝蒙特報告」(Belmont Report)所提出的「尊重個人」(respect for persons)原則便是目前多數研究倫理規範的基礎精神。然而既有的倫理規範並不能充分關照原住民族的基因研究風險，針對特殊的被研究社群，必須從集體的角度來思考適當的倫理原則與機制。
本文透過新增的「尊重社群」(respect for communities)倫理原則以及原住民族集體權利保護的討論，試圖勾勒原住民族的基因研究倫理規範架構，包括研究計畫的審查參與及利益分享事項的溝通與討論等，皆指向本文的中心主旨：研究者必須提供原住民族表達意見的管道與機會，以反映研究內容或其它事項是否與原住民族的傳統文化有所扞格，並尊重原住民族集體決定事務的權利。
回顧台灣當前的相關法規範，例如「原住民族基本法」或「研究用人體檢體採集與使用注意事項」等，則尚未體認原住民族基因研究議題的重要性與特殊性，似乎難以避免研究者與原住民族再次發生嚴重的衝突糾紛。法律規範就抽象「文化」的保護固然有其困難，但本文認為，於生物科技議題至少應予原住民族表示意見的機會，藉以補充研究者與其它研究審查專家所可能忽略的非主流文化觀點。
[ 英文摘要 ]
For the environmental and other scientific reasons, indigenous peoples are special subjects for genetic researchers. However, there are many conflicts with each other, such as the Human Genetic Diversity Project and the Havasupai case in America, or the Kavalan case in Taiwan, to present us that genetic research not only may lead to “discrimination” or ”stigma” to indigenous peoples, but also destroy their traditional culture value.
As the Nuremberg Code of 1947 and the important ethics principle “respect for persons” which the Belmont Report of 1979 provided, most research ethics issues merely focused on protecting participant’s autonomy and never provided enough considerations for indigenous peoples. Therefore, we had better design proper research ethics principles and mechanisms on the basis of the protection of “collective rights” for special communities in genetic research.
This thesis has a trial to establish the genetic research ethics structure for indigenous peoples according to the new principle “respect for communities” and protection of collective rights. Furthermore, the main idea of this structure is asking researchers to provide indigenous peoples with sufficient chances and avenues to express their opinions in the process. For example, indigenous peoples should have opportunities to review the research proposals, and discuss benefit-sharing issues as well. This is mainly by means of presenting the conflicts between research and indigenous culture to respect for their collective rights.
However, the statues related nowadays in Taiwan, such as Native Peoples Basic Law and other research ethics regulations, are insufficient to deal with special genetic ethics problems of indigenous peoples. Our legal system remains to emphasize on protection of participant’s autonomy, and it seems hard to avoid disputes between indigenous peoples and genetic researchers. Indeed, it’s not easy for legal norms to protect abstract “culture.” But as this thesis wishes, indigenous peoples should obtain their chances to express opinions in research, at least in biotechnology area, and so as to supplement non-mainstream concepts neglected by researchers and IRB members.
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