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題名 | 研究倫理作為研究自由的內在界限--以生物資料庫的原住民族基因研究為核心=The Research Ethics as the Freedom of Research's Inner Limit--The Genetic Biobank Research of the Aborigines as the Core |
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作者 | 許育典; 林修睿; 林修睿; | 書刊名 | 東海大學法學研究 |
卷期 | 47 2015.12[民104.12] |
頁次 | 頁75-129 |
分類號 | 588.36 |
關鍵詞 | 生物資料庫; 研究自由; 研究倫理; 原住民族; 財產權; 身心不受傷害權; 隱私權; Aborigines; Human biobank; The research ethics; The freedom of research; The genetic research; The protection of fundamental rights; |
語文 | 中文(Chinese) |
中文摘要 | 近年來,生物科技無論在醫療、食品、材料…等領域皆有重大的發展。而為了保存人類族群的基因檢體以供後續研究或利用,世界各國紛紛投入大型生物資料庫的建置,在進行建置與後續利用的過程中,研究者受到研究自由的保障,得自由的決定如何進行研究、是否發表研究結果、如何利用研究結果…等事務。但此類研究並非沒有風險,基因歧視、財產權的侵奪、對研究參與者的欺瞞…等問題,均可能在研究過程中產生,如果研究者未遵守一定規範,極有可能會傷害到研究參與者的基本權利。原住民族由於其基因的高度特異性與一致性,成為生物資料庫建置與利用時重要的基因檢體提供者,但由於歷史、文化因素,他們往往成為社會上的弱勢族群,一旦生物資料庫中的資料外洩或受不當利用,即有可能對其造成重大的危害。為減少上述風險的產生,研究倫理扮演重要的角色,其要求研究者尊重個人、增進福祉、合理分配研究產生的利益,營造一個研究參與者與研究者和平共處的環境。在這些面向上,研究倫理擔任著研究自由界限的角色,本文即試圖分析生物資料庫可能造成的風險(特別是對原住民族),指出研究倫理如何應用在這些問題上,並探討研究倫理基本原則的憲法基礎。 |
英文摘要 | In recent years, the field in biotechnology including medical treatment, food products, material and so on, have a significant growth. In order to preserve the genetic samples of human race for advanced research, many countries have started to contribute Human Biobanks. In the progress, researchers are protected by the freedom of research, in other words, they can decide what to research; how to research; whether to declare the results of the research or not…and so on by themselves. But in the progress of the research, many types of risks may happen too, if the researchers don’t follow some disciplines, the research can be harmful to the participants of the research. In the genetic research field, the Aborigines play an important role because of the uniqueness and consistency of their genome. However, due to the disadvantaged status of the Aborigines, the research of the Aborigines genome may raise unique legal and ethical problems at the same time. Considering the instabilities of the Aboriginal societies, these problems can be deadly to the structures of their societies. To avoid such situations, this essay tries to analysis the risks of contributing Human Biobank and the basis of Research Ethics in the Constitution. Besides the theory contributing, in other to protect the fundamental rights of the Aborigines, this essay tries to provide some suggestions in practice for the genetic research toward them. |
本系統之摘要資訊系依該期刊論文摘要之資訊為主。