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原住民與基因研究者對於原住民基因研究的認知差異

Conceptual Differences between Researchers and Subjects in Genetic Research on Taiwan Indigenes

摘要


過去國外原住民基因研究倫理爭議頻傳,主要原因是原住民與基因研究者之間對於基因研究的認知不同。台灣原住民基因研究近年亦爆發許多爭議,同時「台灣生物資料庫計畫」展開在即,原住民是採樣計畫中的重要目標,因此原住民與基因研究人員之間的認知差異必須清楚地釐清,雙方才有互相合作的可能。本研究藉由質性以及問卷研究呈現台灣地區原住民以及基因研究者對於原住民基因研究的認知差異。先針對一般原住民、原住民部落醫護人員、以及基因研究者(包括漢人與原住民籍)進行小群體的深度訪談,勾勒出認知差異的大略內容後,進一步設計問卷進行大群體調查。質性研究結果發現台灣原住民與基因研究者之間確實存在重大認知差異;一般原住民不瞭解為何外界對原住民基因的報導多為負面,如「飲酒基因」、「痛風基因」,好像影射他們的「種」不好。一般原住民認為研究進行前應該先清楚說明到底是什麼研究,結果公布之前也應該讓部落先檢視,避免讓原住民社會被污名化;覺得研究原住民基因是因為身為原住民,因此原住民的集體同意與個人同意一樣重要。認為如果有商業利益,必須回歸所有族人而非僅僅提供檢體的個人。部落原住民醫護人員進一步指出,過去基因研究人員大多都沒有獲得知情同意就採檢,因此造成許多糾紛。而基因研究人員的態度,則認為基因研究可造福全人類,不一定需要實際解決部落健康問題。認為研究不需要經過原住民集體同意;針對原住民認為研究利益回歸族人的想法,表示無法想像。論文發表則認為經過同儕審查即可,不需先經過部落檢視。問卷調查結果更凸顯了彼此之間的認知差異。一般原住民受訪者中47%曾經有過在部落被抽血的經驗,但每次都知道抽血目的的佔32%,有時知道抽血目的佔42%,從未清楚抽血目的者佔26%。對於研究需要本人之外的其他形式同意,表示當地衛生所人員、原住民族委員會、頭目或村長、原住民地方行政長官同意者依序為41%、32%、28%、27%。對於研究者的族群身份,相信本族的研究者(50%)遠高於只要是學者就相信(26%),同時有20%受訪者認為誰都不相信。基因研究人員中則對於是否要獲得本人外的其他形式同意不置可否,73%曾經思考過生物科技對於倫理、法律與社會的問題,但55%未在課堂上接觸相關的課程。教育的缺失造成67%的基因研究人員在過去研究中未獲得知情同意即採檢。正視這些認知差異並健全倫理審查制度,尤其是社群同意權的實踐,才是維護原住民人權並順利進行遺傳研究的雙贏方式。

並列摘要


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.

參考文獻


Blumer, Martin(ed.)(1982).Social Research Ethics.London:Mancillian.
Butler, Declan(1999).Genetic Diversity Proposal Fails to Impress International Ethics Panel.Nature.377(6548),372-73.
Dodson, Michael,Williamson, Robert(1999).Indigenous Peoples and the Morality of the Human Genome Diversity Project.Journal of Medical Ethics.25(2),204-08.
Floyd, J. Fowler, Jr.、傅仰止譯、田芳華譯(1995)。改進調查問題─設計與評估。台北:弘智文化事業有限公司。
Foster, Morris W.,Bernsten, Deborah,Carter, Thomas H.(1998).A Model Agreement for Genetic Research in Socially Identifiable Populations.American Journal of Human Genetics.63(3),696-702.

被引用紀錄


張朝琴(2003)。台灣山地鄉原住民醫療照護體系之研究---健康權保障觀點的檢視〔博士論文,國立臺灣師範大學〕。華藝線上圖書館。https://www.airitilibrary.com/Article/Detail?DocID=U0021-2603200719132030

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