原住民基因研究之倫理課題與規範初探

The Ethical and Regulatory Framework for Genetic Research on Indigenous Peoples: A Preliminary Analysis

李崇僖(Chung-Hsi Lee)

《臺大法學論叢》 36卷3期 (2007/09) Pp. 465-518

https://doi.org/10.6199/NTULJ.2007.36.03.06

摘要

近年來隨著基因科技之發展，生物醫學界致力於探討疾病與基因之關係，因此在國際上以及許多國家內部都有進行基因檢體採集與儲存之計畫。有鑑於基因研究典範與過去醫學研究有所不同，而原住民族群又是特別容易受到基因研究影響的群體，因此本文乃針對原住民基因研究之倫理規範加以探討。本文採取自由主義多元文化論之立場，強調對原住民族特別保護之必要性，但同時應兼顧多元族群社會之相互尊重與利益協調，並保持個人應有的自主決定空間。 本文以「貝蒙特報告」所揭示之三項醫學倫理原則爲基礎，檢討其在基因研究上之適用性，並探討原住民應受到何種權利保障才符合醫學倫理之基本精神。本文認爲對原住民進行基因研究時，必須尊重原住民族作爲一個整體之利益，因此在集體協商方式上需要建立更詳細的規範架構。

關鍵字

人類基因多樣性計畫 ； 貝蒙特報告 ； 社區諮商 ； 集體同意 ； 概括同意

並列摘要

In the past few years, biomedical researchers have focused their works on understanding underlying genetic links to complex diseases. These efforts have started several genetic sampling and databases projects, both on international level and individual countries. Since genetic research has very different impacts to participants than traditional medical research and indigenous peoples are always the most vulnerable to this research, this article tries to analyze the ethical framework for those genetic researches concerning indigenous peoples. For the basic presumption of this analysis, this article stands on the principles of liberal multiculturalism.
Starting from the famous biomedical research ethical statement named Belmont Report, this article reviews the principles and adapts them to genetic research. In conclusion, the recommendations stress the importance of acknowledging the obligations that sample collectors should be responsible to indigenous peoples.

並列關鍵字

Human Genome Diversity Project ； Belmont Report ； community consultation ； group consent ； general consent

參考文獻

Anaya, James(1996).Indigenous Peoples in International Law.Oxford University Press.

Andrews, Lori B.,Maxwell J. Mehlman,Mark A. Rothstein(2002).Genetics: Ethics, Law and Policy.St. Paul:West Group.

Austin, A. Melissa(2005).Applying International Guidelines on Ethical, Legal, and Social Issues to New International Geneabnks.Jurimetrics Journal.45,115-134.

Barsh, Russel L.(2003).Pharmacogenomics and Indigenous Peoples: Real Issues and Actors.Cardozo Journal of International and Comparative Law.11,365-388.

Benatar, R. Solomon(2004).Towards Progress in Resolving Dilemmas in International Research Ethics.Journal of Medicine& Ethics.32,574-582.