引用
缺席的多元公眾:Taiwan Biobank的建置、爭議與科學治理
Absent Publics: Taiwan Biobank, Controversy, and Scientific Governance
作者:李宛儒(Wan-Ju Lee)、蔡友月(Yu-Yueh Tsai) | 首次發表於 2020-05-11 | 第 64 期 December 2018
DOI:https://dx.doi.org/10.6786/TJS.201812_(64).0002
研究論文(Research Articles)
DOI:https://dx.doi.org/10.6786/TJS.201812_(64).0002
研究論文(Research Articles)
論文資訊 | Article information
摘要 Abstract
本文帶入「科學的公眾想像」的概念,透過Taiwan Biobank 不同時期的倫理、法律、社會(Ethical, Legal and Social Issues, ELSI)爭議,分析「缺席的多元公眾」現象背後的科學制度文化與公眾參與機制,以及臺灣科學主義專家治理的特色與難題。首先,全文指出在科學與非科學的劃界下,科學家倚賴人文社會科學學者協助制定倫理治理架構。但相關公眾諮詢規劃大多停留在論述層次,並未發展出容納多元行動者的參與機制,因此無法針對Taiwan Biobank議題提出不同公民認識論的反省。其次,2005-2010年是Taiwan Biobank爭議的高峰,主要由有能力發聲的少數人權團體與人文法律學者等做為公眾代言人,提出對 Taiwan Biobank的ELSI挑戰。初期這些外部ELSI學者,被科學家想像為不理解科學計畫的反科學公眾,輕忽這些公眾挑戰背後所代表的不同價值,也使得Taiwan Biobank創新治理的想像被限縮。最後,本文指出由於欠缺「上游式公眾參與」的對話機制,不同意見的行動者訴諸媒體發聲,反而擴大彼此之間的對立。在無法形成社會共識的情況下,Taiwan Biobank走向以法制化解決爭議的方式,過度強調法律的形式化管制策略,也難以建立具有彈性的反身性治理模式。
關鍵詞:基因、臺灣人體生物資料庫、公眾溝通、治理、爭議
“Scientific imaginaries of publics” is used to analyze Taiwan Biobank's scientific governance practices and the ethical-legal-social controversy that peaked between 2005 and 2010. We argue that Taiwan Biobank, as an example of absent publics and a model of expert scientism governance, could not reflect civic epistemologies because it had no institutional mechanisms for including multiple publics. Social scientists and NGOs have become public representatives challenging Biobank problems. Initially, scientists regarded dissenters as anti-science and irrational, resulting in the neglect of diverse values underlying public challenges, and in restrictions on innovative governance practices. Since Taiwan Biobank lacked an "upstream public engagement" mechanism, actors used the media to voice opinions without resolving conflicts. The Human Biobank Management Act was passed in 2010 as a solution, but the overemphasis on formative regulatory procedures limited the development of more flexible and reflexive governance approaches by Taiwan Biobank.
Keywords:gene, biobank, public participation, governance, controversy