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  • 學位論文

論台灣人體生物資料庫的利益分享:一個科技民主理念的分析

On Benefit-sharing of Taiwan Biobank: A Perspective of Technical Democracy

指導教授 : 李茂生 吳建昌
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摘要


摘要 研究主題 本論文的主題是台灣人體生物資料庫的利益分享,它指的是參與者在捐贈檢體之後能否及獲得什麼樣的利益回饋; 不過即使我國2010年立法通過的人體生物資料庫管理條例的適用對象並未專指特定資料庫,「台灣生物資料庫」仍是制度討論時不可忽視的典型,又根據其子法人體生物資料庫商業運用利益回饋辦法,所謂的利益回饋僅限於研究成果加以商業運用之後所得利益。 問題意識 本論文並不意圖探求利益分享機制實行的合理化基礎,而是希望瞭解,為什麼利益分享倡議會在特定時空背景藉由生物資料庫的建制被提出,它反映了台灣社會什麼樣的不滿,而又如何可能去回應這些欲求? 研究方法 1.法釋義學因為預設特定倫理主體形象與治理正當性基礎而有其侷限,本文認為,既有的法釋義學是以法治國理念下的個人自由權保障為核心,但其不僅無法探求法律的社會背景文化,甚至還可能是台灣社會每遇「重大社會爭議」即陷入公共溝通僵局的根源。2.所以將台灣生物資料庫的相關論述當成研究對象,首先對於法學界的論述進行分析,希望找出當前台灣在地規範論述陷入僵局的癥結; 然後再爬梳利益分享概念的起源與流變脈絡,目的是要瞭解利益分享有什麼樣的可能性、以及制度與倫理情境的搭配組合。3.最後再回到台灣在地的倫理情境,探究利益分享能否回應不滿,並且也藉此促進各界──尤其是法學界與其他學界和民間社會──之間的溝通交流。 論點主張 考量生物資料庫的本質在凝聚共同人群生活,且事實上也挑戰傳統主權國家治理框架的效度極限,那麼台灣社會似乎必須重新思考適合的治理正當性路線,相對於「法治國」的「民主」路線自然浮出檯面。民主的核心意涵是治理的主觀面向,亦即強調被統治者的利益應該尤其自己實現,換言之,其著眼於統治者與被統治者之同一性; 更進一步,同一性需要公共參與來實現,但人們必須思考如何從消極的參與(被徵召為人群)推進到積極的參與(良善的共同體生活),其中的關鍵就在於人們能否參與政策形成。 研究結果 1.若考察生物資料庫之利益分享概念的起源,可以追索到二個脈絡,一是研究關係中存在的不正義,尤其是著眼於南北不平等的全球正義概念,二是生醫研究治理框架的「社群轉向」,也可以說是對「知情同意」的反省; 而這二條脈絡的交會則在集體化的倫理主體與利益分享概念的普遍化,後者指的是讓基因科技事業的潛能擴展利益分享的格局,跳脫既有的對象、客體限制,乃至於以社群的需求為依歸。 2.問題是,利益分享的實行有實際的困難(道德論據混淆、無法處理結構問題、個人保護不足、財產權請求基礎不確定),晚近的研究紛紛強調以「公眾考量」的觀點進行實證調查,結果發現公眾在意控制權的延伸與隱私風險的防免,倘若將利益分享的核心概念定位為「互惠」,那麼將能夠找到該機制的正當化基礎,因為「互惠」概念不但可以調和公/私益的衝突,並拓展利益分享機制的可能性,同時也提醒人們重點其實是在共同社會關係、或者說共同體/社群的建立。 3.目前諸種利益分享的提案中,以Winickoff的公益信託和決策權力分享最為理想,令人訝異的是,它們與盧梭的社會契約論非常相似; 這並不是巧合,Winickoff本身即主張「讓生命倫理成為社會契約」,而在盧梭的體系裡,互惠關係正是社會契約的成立要件(否則淪為虛假布爾喬亞剝削契約),進一步,互惠關係的實現還必須預設「整體與個體之同一性」的實現,而(被統治者與統治者之)同一性正是民主化過程的主要動力,此外,盧梭的「普遍意志」也正是希望實現積極的公共參與,進而讓公共性/共同體/公民誕生。 4.由於「重大社會爭議」往往發生在多元、具有殖民經驗的社會之轉型時期,並涉及治理正當性複合面向的欠缺,因此筆者從政治、經濟、文化三方面對台灣實行生物資料庫之利益分享的倫理情境加以觀察。結果發現,台灣社會至今仍具有強烈對於威權反動的情緒,這可以由人權的強調、臨床試驗作為主要意象、乃至於政府與民間的對立看出,利益分享也因為社會對於共同體理念的懼怕而不受重視; 經濟方面,台灣社會要求共享經濟發展衍生利益的呼聲及對於生醫產業當中政商連帶關係的質疑,其實是源自對當前經濟政策背後的發展/競爭敘事、以及菁英主導決策模式的批判; 在文化方面筆者聚焦於基因科技對認同政治的介入,既有STS學界對此已有相當研究成果,他們指出TBB的建制背景是因應台灣在國際上的孤立及經濟競爭的需求,必須靠基因科技對族群(人群分類範疇)的建構性鞏固台灣的國族共同體意識。 5.問題是,這種建構性是好是壞?反對以國族認同為基礎的菁英決策模式也必然反對族群的建構性嗎?筆者認為,利益分享也有可能促進積極主動的公共參與──政策形成的層次,而且,這和利益分享必然需要一個得以加以分配利益的族群並不抵觸,因為生醫研究中的利益分享、或者說互惠關係總是與集體化主體同時出現,正因為創造價值的活動必須在群體之中才能進行,其政治正當性才會建立在拿取與給予、亦即互惠關係之上; 甚至,群體也能夠透過實作來加以指認,這也是生物資料庫治理框架的重要性所在,因為群體必須透過治理框架獲得「能動性」來創造其自身的主體性,呼應公共參與或同一性民主的重要性。 6.對台灣社會具體的建議是,應該揚棄法治國式自由個人式主體、但也不相信人能僅靠理性言說獲得政治能動性,而是尋找具有中介性及公共性的在地社群,以在地的需求為利益分享機制實行的依歸。再者,不一定要創設一個嶄新的生物資料庫之利益分享框架,而不妨考慮利用及改革已經推行已近二十年的「社區總體營造」,這也考慮到社會本身的動力由社會運動逐漸轉移進入在地社區工作,如此才能寄望利益分享機制有效地回應台灣社會對於生物資料庫相關政策的種種倫理疑慮、乃至於針對整體治理正當性之欠缺的不滿。需注意的是利益分享機制可能與在地產生齟齬(例如在地傳統組織與外來公共行動社團之間),因此必須具備彈性,賦予一定程度的監督、決策權限,且扭轉「發展」的取向,讓在地社群能夠凝聚、活化、自主。 代結語 生物資料庫的利益分享毋寧只是提供另一個契機,讓台灣社會有機會從科技民主理念的角度重新思考,共同的良善生活是否可能。

並列摘要


Abstract Topic This Thesis deals with the topic: Benefit-sharing in framework of Taiwan Bi-obank. This Mechanism refers to giving something, especially monetary feedback in Taiwanese legal system, back to research participants. Questions Not on justification, but rather on the background, history and contexts in which Benefit-sharing became a topic in Taiwan. Does it reflect any desire of Taiwan society and could they be responded by Benefit-sharing suitably? Methods I would work in perspective of „big disputable issue in a society“, rather than traditional Methodology of Law because of its possible limits while dealing with social contexts and problems of communication in a society. So I take related (ju-risprudential) discourses as event which could be studied for their origins and changes. Most important is to see what kind of ethical situation is located in Taiwan society. Arguments In light of the essence about gathering people, to which the traditional way of governance wouldn’t work, Taiwan should think about an alternative way of producing political legitimacy. Not like “rule of law” (“Rechtsstaat” in German), Democracy emphasizes the ruled realize their own interests by themselves, which means to be rulers and promotes the “Identity of rulers and the ruled.” Therefore public participation would be needed. However there is different be-tween passive participation (being recruited) and positive one (leading a good life in a community), for which formation of politics is essential. Results 1.Two contexts of Benefit-sharing discourses have been confirmed: the injustice in research relation, especially in view of global inequity; the “communal turn” in bioethics. These two flows intersect at two points: collectivization of ethical sub-ject and “universal Benefit-sharing.” 2.Current researches focusing on public concern discover that most make con-cerns about risk of privacy and how to extend their control over donated objects. Then the idea of “gift” comes up as ground of benefit-sharing which is generally understood. Furthermore conflicts between public and privacy could be eased, therefore a community could be built up. 3.Winickoff’s idea of benefit-sharing (“Biotrust” and “Power-sharing”) is consid-ered not only as the ideal form of one, but also to be alike to Rousseau’s idea of social contract. It should be no coincidence. Winickoff has ever promoted “Bio-ethics as social contract.” Besides, reciprocity and identity of all and part are two essences in Rousseau’s system. The later is also the motive of democratization. Rousseau’s “general will” calls for public participation, too, so that publici-ty/community/citizens would come up. 4. A “big disputable issue in a society” occurs usually in the transforming stage in a society with multiple ethnics and colonial experience. Its cause should be the complex lack of political legitimacy, ex, political, economical and cultural dimen-sions. I made an observation along with these three dimensions and found: There is still strong sentiment relating reaction against authoritarian rule, be-cause it could be seen that human rights are so stressed, clinical experiment is the main image of Bioethics, opposition between government and civil society and rejection of community-idea are another evidences. In economical dimen-sion people criticize the competing/developing-narrative and elite-based mode of decision-making more and more. In cultural dimension one could find a lot from STS academic field pointing out that the foundation of TBB would be in-tended to build up identity of Taiwan-community by geneticing human catego-ries, so that Taiwan could deal with the isolation in the international society and global competing ideology. 5. The question is: Is this nation-building positive or not? My thought is that ben-efit-sharing need a community because reciprocity comes always with collec-tives together. Its ground is that a value-creating activity only occurs in a com-munity. Furthermore, a community could be identified through practice, for which the framework of Biobank is essential. Then agency might be got to realize one’s own subjectivity, echoing with the importance of public participation and identity-democracy. 6.My concrete suggestions for Taiwan society are: First, a ethical subject in the sense of rule of law (Rechtsstaat), namely a free individual, could be abandoned. However I don’t believe logocentric subject with agency, either. Rather an inter-mediate community with publicity and care about local need could be trusted. Second, a newly created framework only applied to Benefit-sharing of Biobank is not needed, instead we could think about utilizing the existing framework, con-texts or nets of “local community building.” Taking consider of the shifting-trend of social drives from social movement to local community work in Taiwan, bene-fit-sharing based on local community might be competent reacting to the dis-contents about the total lack of political legitimacy. Important would be, to provide a community with authority of control and decision-making, to change the developing ideology, while being aware of the “outsider”-nature of bene-fit-sharing and equipped with flexibility, so that a local community would be built up, vitalized and have autonomy. “Conclusion” To deliberate this topic would actually be a chance for Taiwan society to see, in perspective of technical democracy, how a common good life could be possible. Keywords Taiwan Biobank; Benefit-sharing; politics of Identity; community; Democracy and Rule of law (Rechtsstaat); political legitimacy/legitimacy of governance; public participation; ethical subject/agency/empowerment; community-building

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