- 學位論文
少數族群在人體生物資料庫中基因蒐集之保障 ─團體同意與公共參與
Protecting Minority in Biobank: Collective Consent and Public Participation
摘要
基因研究領域中，關於族群利益的問題最早是在二十多年前開始被討論。隨著西方國家對研究客體的需求，他們逐漸把眼光放在開發中、未開發國家人民的基因上。開發中及未開發國家並未了解到自身基因的珍貴性，因此未設立保護機制。加上西方國家以群體而非個人為單位進行基因研究，使得基因研究不僅對被研究的個人，甚至對整個族群都造成巨大的危害。 除了已開發國家對開發中、未開發國家的基因資源剝削外，一個國家中的行政權力也會對弱勢的少數族群進行基因剝削。這種剝削關係在基因研究，尤其是人體生物資料庫中，更是發揮得淋漓盡致。但是，在知識及力量不對稱的情況下，讓支配者予取予求。雖然生物倫理嘗試透過告知後同意來保障少數族群的基因研究，但告知後同意的保護是否足夠、是否仍需要其他機制補充，都是重要的問題。 本論文先對所欲討論的人體生物資料庫、少數族群概念加以說明。接著，結合外國立法例，討論各國發展人體生物資料庫的原因及發展過程，並說明各國在基因研究中，對同意制度的各種規範。整理結果發現，各國大多採行告知後同意制度，因而開始檢討傳統告知後同意制度是否有所不足，並試著建構團體同意以補強之。本論文更進一步自公共參與的角度切入，從政策上看待應如何保護對於少數族群基因的研究蒐集少數族群基因應如何被保護。 本論文研究發現，基因特性在於人與人之間的連結，一個人的基因會與其他家族成員共同分享。因此，在生物醫學研究時，族群的重要性可能不下於個人。由於基因的共享特性，使得人之間產生緊密的連結，這不只表現在家族成員之間，更延伸至整個族群。然而人體資料庫為求較大的研究實益，多以整個族群為單位搜集基因，因此，在生物醫學研究時，族群的重要性可能不下於個人。
並列摘要
In the field of genetic research, the concern about group interest has been in continuous discussion since twenty years ago. With the need of gene for research, western countries became to focus on the people of developing and underdeveloped countries for their valuable gene resources. All this countries proceed their genetic research using “group” as a unit, not “individual”, making not only individual but also whole group in peril. Besides the genetic exploitation done by developed countries towards developing or least-developed countries, administrative authorities would often conduct genetic exploitation towards minority groups within the country. This kind of exploitative relationship in genetic research reaches its peak in the context of establishing Human Body Biological Database, or simply, “Biobank”. Through collecting human gene, biobank makes endeavor to find out the reasons of disease and try to prevent it. Unfortunately, the asymmetry of knowledge and power makes the situation worse. Although traditional bioethics tries to solve the problem by applying informed consent system, there are still many problems on questions reside in whether informed consent is enough for protecting minority when minorities face genetic exploitation. These are the questions we do need to ponder on. In the beginning, this thesis tries to illustrate the concept of biobank and minority. After the illustration, we compare different biobanks in global perspectives. The intention is to realize what kinds of consent systems these countries use in genetic research. The result shows that group consent was not adopted by any countries in the world. After that, this thesis begins to examine the problems lie in informed consent system, trying to construct the theory of group consent to improve it. Moreover, from the perspective of public participation, this thesis tries to understand how to protect minority in domestic policy. We deeply believe that the nature of gene is between person and person, and we share our gene with others in any circumstance. Biobank collecting their gene tissues uses group as a unit. Therefore, all this evident shows that, in biomedical research, group is never inferior to a single person.