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題名:缺席的多元公眾:Taiwan Biobank的建置、爭議與科學治理
書刊名:臺灣社會學刊
作者:李宛儒蔡友月
作者(外文):Lee, Wan-juTsai, Yu-yueh
出版日期:2018
卷期:64
頁次:頁49-110
主題關鍵詞:基因臺灣人體生物資料庫公眾溝通治理爭議GeneBiobankPublic participationGovernanceControversy
原始連結:連回原系統網址new window
相關次數:
  • 被引用次數被引用次數:期刊(1) 博士論文(0) 專書(0) 專書論文(0)
  • 排除自我引用排除自我引用:1
  • 共同引用共同引用:177
  • 點閱點閱:5
Other
1.顏厥安(20060125)。生命奧秘的公與私。  延伸查詢new window
期刊論文
1.Hagendijk, Rob、Irwin, Alan(2006)。Public deliberation and governance: Engaging with science and technology in contemporary Europe。Minerva,44(2),167-184。  new window
2.Chou, Kuei-tien(20070900)。Conflicts of Technology Policy and Governance Paradigm in a Knowledge-Based Economy: A Case Analysis of the Construction of the Taiwan Biobank。Issues & Studies,43(3),97-130。new window  new window
3.Habermas, Jürgen(2006)。Political Communication in Media Society: Does Democracy Still Enjoy an Epistemic Dimension? The Impact of Normative Theory on Empirical Research。Communication Theory,16(4),411-426。  new window
4.Irwin, Alan(2001)。Constructing the scientific citizen: Science and democracy in the biosciences。Public Understanding of Science,10(1),1-18。  new window
5.蔡友月(20120600)。科學本質主義的復甦?基因科技、種族/族群與人群分類。臺灣社會學,23,155-194。new window  延伸查詢new window
6.Wynne, Brian(20071200)。Public Participation in Science and Technology: Performing and Obscuring a Political-Conceptual Category Mistake。East Asian Science, Technology and Society,1(1),99-110。new window  new window
7.Braun, Kathrin、Schultz, Susanne(2010)。'...A Certain Amount of Engineering Involved': Constructing the Public in Participatory Governance Arrangements。Public Understanding of Science,19(4),403-419。  new window
8.李崇僖(20070200)。基因資訊隱私保護法理與規範。臺灣本土法學雜誌,91,71-85。  延伸查詢new window
9.Burton, Bob(2002)。Proposed Genetic Database on Tongans Opposed。British Medical Journal,324(7335),443。  new window
10.Petersen, Alan(2005)。Securing our genetic health: engendering trust in UK Biobank。Sociology of Health & Illness,27(2),271-292。  new window
11.范玫芳、邱智民(20111200)。英國基因改造作物與食品公共辯論:公民參與與科技政策模式之評估。公共行政學報,41,103-133。new window  延伸查詢new window
12.林瑞珠、廖嘉成(20070100)。導覽Taiwan Biobank重要法律議題。月旦法學,140,169-179。new window  延伸查詢new window
13.Levitt, Mairi、Weldon, Sue(2005)。A Well Placed Trust?: Public Perceptions of the Governance of DNA Databases。Critical Public Health,15(4),311-321。  new window
14.劉宏恩(20060400)。論生物醫學研究中利益衝突(Conflict of Interest)問題之規範--以利益衝突之基本概念及其規範上之必要性為討論核心。律師雜誌,319,65-81。  延伸查詢new window
15.張兆恬(20121200)。民主審議作為一項生醫研究倫理原則--國際人權、美國法及臺灣經驗之考察。中華國際法與超國界法評論,8(2),269-298。new window  延伸查詢new window
16.Welsh, Ian、Wynne, Brian(2013)。Science, Scientism, and Imaginaries of Publics in the UK: Passive Objects, Incipient Threats。Science as Culture,22(4),540-566。  new window
17.(20070700)。臺灣生物資料庫倫理治理綱領(草案)。法律與生命科學,2,46-60。  延伸查詢new window
18.范建得、林宛萱(20130400)。「人體生物資料庫管理條例」與「人體研究法」之適用關係初探。月旦法學,215,5-16。new window  延伸查詢new window
19.蔡友月、李宛儒(20161200)。想像未來:臺灣人體生物資料庫、基因利基與國族建構。臺灣社會學,32,109-169。new window  延伸查詢new window
20.Burgess, Michael、O'Doherty, Kieran、Secko, David(2008)。Biobanking in British Columbia: Discussions of the Future of Personalized Medicine Through Deliberative Public Engagement。Personalised Medicine,5(3),285-296。  new window
21.Callon, Michel(1999)。The Role of Lay People in the Production and Dissemination of Scientific Knowledge。Science, Technology and Society,4(1),81-94。  new window
22.Cambon-Thomsen, Anne、Ducournau, Pascal、Gourraud, Pierre-Antoine、Pontille, David(2003)。Biobanks for Genomics and Genomics for Biobanks。Comparative and Functional Genomics,4(6),628-634。  new window
23.Chadwick, Ruth、Berg, Kåre(2001)。Solidarity and Equity: New Ethical Frameworks for Genetic Databases。Nature Reviews Genetics,2(4),318-321。  new window
24.Cutter, Anthony Mark、Wilson, Sarah、Chadwick, Ruth(2004)。Balancing Powers: Examining Models of Biobank Governance。Journal of International Biotechnology Law,1(5),187-192。  new window
25.Elger, Bernice S.、Caplan, Arthur L.(2006)。Consent and Anonymization in Research Involving Biobanks: Differing Terms and Norms Present Serious Barriers to an International Framework。Science and Society,7(7),661-666。  new window
26.Godard, Béatrice(2004)。Strategies for Consulting with the Community: The Cases of Four Large-scale Genetic Databases。Science and Engineering Ethics,10(3),457-477。  new window
27.Gottweis, Herbert(2008)。Participation and the New Governance of Life。BioSocieties,3,265-286。  new window
28.Gottweis, Herbert、Lauss, Georg(2012)。Biobank Governance: Heterogeneous Modes of Ordering and Democratization。Journal Community Genetics,3(2),61-72。  new window
29.Hawkins, Alice K.、O'Doherty, Kieran(2010)。Biobank Governance: a Lesson in Trust。New Genetics and Society,29(3),311-327。  new window
30.Laurie, Graeme(2011)。Reflexive Governance in Biobanking: on the Value of Policy Led Approaches and the Need to Recognize the Limits of Law。Hum Genet,130,347-356。  new window
31.Laurie, Graeme(2017)。What Does It Mean to Take an Ethics+ Approach to Global Biobank Governance?。Asian Bioethics Review,9,285-300。  new window
32.Schuurbiers, Dann(2011)。What Happens in the Lab: Applying Midstream Modulation to Enhance Critical Reflection in the Laboratory。Science and Engineering Ethics,17(4),769-788。  new window
33.Tsai, Yu-yueh(20100000)。Geneticizing Ethnicity: A Study on the "Taiwan Bio-Bank"。East Asian Science, Technology and Society,4(3),433-455。new window  new window
34.Wallace, Helen(2005)。The Development of UK Biobank: Excluding Scientific Controversy from Ethical Debate。Critical Public Health,15(4),323-333。  new window
35.Wynne, Brian(2011)。Lab Work Goes Social, and Vice Versa: Strategising Public Engagement Processes : Commentary on: 'What Happens in the Lab Does not Stay in the Lab: Applying Midstream Modulation to Enhance Critical Reflection in the Laboratory'。Science and Engineering Ethics,17(4),791-800。  new window
36.劉宏恩(20040600)。冰島設立全民醫療及基因資料庫之法律政策評析--論其經驗及爭議對我國之啟示。臺北大學法學論叢,54,41-43+45-99。new window  延伸查詢new window
37.林國明(20090600)。國家、公民社會與審議民主:公民會議在臺灣的發展經驗。臺灣社會學,17,161-217。new window  延伸查詢new window
38.周桂田(20041200)。獨大的科學理性與隱沒(默)的社會理性之「對話」--在地公眾、科學專家與國家的風險文化探討。臺灣社會研究季刊,56,1-63。new window  延伸查詢new window
39.何建志(20080600)。臺灣生物資料庫之倫理、法律、社會議題研究--回顧與政策分析。臺灣科技法律與政策論叢,5(1),119-166。new window  延伸查詢new window
40.杜文苓(20100600)。環評決策中公民參與的省思:以中科三期開發爭議為例。公共行政學報,35,29-60。new window  延伸查詢new window
41.Macnaghten, Phil、Kearnes, Matthew B.、Wynne, Brian(2005)。Nanotechnology, governance and public deliberation: What role for the social sciences?。Science Communication,27(2),268-291。  new window
會議論文
1.Zhuang, Ming-zhe(2000)。Research Proposal: A Population Genetic Data Base for Taiwan。The Minutes of the 24th Academicians Meeting,(會議日期: 2000/07/03)。Taipei:Academia Sinica。  new window
研究報告
1.陳垣崇、沈志陽、吳樹民、龔仁文、黃瑞蓮(2006)。建置台灣生物資料庫先期規劃(第二年度) (計畫編號:DOH95-TDM-113-B001)。臺北。  延伸查詢new window
2.陳垣崇、吳樹民、沈志陽、陳桂苓、陳啟祥(2009)。建置台灣生物資料庫先期規劃(第三年度) (計畫編號:DOH96-TDM-113-B001)。  延伸查詢new window
3.陳垣崇、范建得、李德財、黃明經、梁賡義、潘文涵、陳珍信、沈志陽(2007)。台灣地區生物資料庫建立與多重疾病多重危險因子之世代追蹤研究計畫 (計畫編號:NSC94-3112-B-001-017)。臺北。  延伸查詢new window
4.中央研究院(2004)。2004年台灣地區基因體意向調查與資料庫建置之規劃(基因醫學組第二次電話調查)成果報告書。  延伸查詢new window
5.陳垣崇(2003)。建立「台灣人疾病與基因資料庫」可行性評估 (計畫編號:NSC92-3114-P-001-001-Y)。台北:行政院國家科學委員會。  延伸查詢new window
圖書
1.Goodin, Robert E.(2008)。Innovating Democracy: Democratic Theory and Practice After the Deliberative Turn。Oxford University Press。  new window
2.Clarke, Adele E.、Mamo, L.、Fosket, J. R.、Fishman, J. R.、Shim, J. K.(2010)。Biomedicalization: Technoscience, Health, and Illness in the U. S.。Durham, NC:Duke University Press。  new window
3.Gottweis, Herbert、Petersen, Alan R.(2008)。Biobanks: Governance in Comparative Perspective。Routledge。  new window
4.Wilsdon, James、Willis, Rebecca(2004)。See-through science: why public engagement needs to move upstream。London:Demos。  new window
5.Irwin, Alan、Wynne, Brian(1996)。Misunderstanding science? The public reconstruction of science and technology。Cambridge University Press。  new window
6.杜文苓(2015)。環境風險與公共治理:探索臺灣環境民主實踐之道。臺北:五南。new window  延伸查詢new window
7.范建得(2010)。人體生物資料庫:管理條例逐條釋義。臺北:五南。  延伸查詢new window
8.Felt, Ulrike、Wynne, Brian(2007)。Taking European knowledge society seriously: report of the Expert Group on Science and Governance to the Science, Economy and Society Directorate, Directorate-General for Research, European Commission。  new window
9.Habermas, Jürgen(1984)。The Theory of Communicative Action。Boston, Massachusetts:Beacon Press。  new window
10.Habermas, Jürgen(1989)。The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society。Cambridge:Polity。  new window
11.Jasanoff, Shelia(2012)。Science and Public Reason。New York:Taylor & Francis Press。  new window
12.Pálsson, Gísli(2007)。Anthropology and the New Genetics。Cambridge:Cambridge University Press。  new window
13.Rose, Hilary(2001)。The Commodification of Bioinformation: The Icelandic Health Sector Database。London:Wellcome Trust。  new window
其他
1.陳垣崇,沈志陽(20060402)。謹慎規劃生物資料庫。  延伸查詢new window
2.吳豪人,劉靜怡(20060410)。科學莫違人權法治。  延伸查詢new window
3.王超群(20060123)。部落裡 沒人搞得清抽血作啥。  延伸查詢new window
4.王超群(20060123)。台灣基因庫抽血「偷跑」?台權會喊卡。  延伸查詢new window
5.李宗祐,黃庭郁,江招青(20060123)。ELSI未健全、未通過IRB審查前國科會:絕不貿然採集血液。  延伸查詢new window
6.陳定信(20161125)。台灣人體生物資料庫倫理委員會(EGC)聲明。  延伸查詢new window
7.陳垣崇,沈志陽(20060227)。建置資料庫.找出國人致病機轉.基因研究已轉為對自己民族的族群研究.其所面臨的倫理法律等議題.各界應理性面對。  延伸查詢new window
8.陳垣崇,沈志陽(20060325)。台灣生物資料庫.關係你我的健康。  延伸查詢new window
9.甯瑋瑜(20060625)。生物資料庫被指騙血。  延伸查詢new window
10.劉靜怡(20060107)。基因資料庫所為何來?。  延伸查詢new window
11.劉靜怡(20060126)。給中研院模範生的期許。  延伸查詢new window
12.劉靜怡(20080626)。是里程碑還是災難?。  延伸查詢new window
13.劉靜怡,劉宏恩(20090507)。台灣生物資料庫荒腔走版。  延伸查詢new window
14.蔡篤堅(20080622)。讓台灣人基因庫全民共有。  延伸查詢new window
15.鄭學庸(20060625)。法令闕如.各項資料誰來監督。  延伸查詢new window
16.劉靜怡(20160725)。生醫研究規範荒漠化。  延伸查詢new window
17.李宗祐(20080620)。基因缺陷若曝光,將引發族群歧視。  延伸查詢new window
圖書論文
1.Wynne, Brian(1996)。Misunderstood Misunderstandings: Social Identities and Public Uptake of Science。Misunderstanding Science? The Public Reconstruction of Science and Technology。Cambridge University Press。  new window
2.Einsiedel, Edna F.(2008)。Public Participation and Dialogue。Handbook of Public Communication of Science and Technology。Routledge。  new window
3.Bucchi, Massimiano、Neresini, Federico(2008)。Science and Public Participation。The Handbook of Science and Technology Studies。MIT Press。  new window
4.Corrigan, Oonagh、Petersen, Alan(2008)。UK Biobank: Bioethics As a Technology of Governance。Biobanks: Governance in Comparative Perspective。Abingdon:Routledge。  new window
5.Jasanoff, Shelia(2005)。Civic epistemology。Designs on Nature: Science and Democracy in Europe and the United States。Princeton, NJ:Princeton University Press。  new window
6.Tai, Terence、Chiou, Wen-Tsong(2007)。Equality and Community in Public Deliberation: Genetic Democracy in Taiwan。Genetic Democracy: Philosophical Perspectives。Springer Publishing。  new window
7.Waterton, Claire、Wynne, Brian(2004)。Knowledge and Political Order in the European Environmental Agency。States of Knowledge。New York:Routledge。  new window
8.Liu, Hung-En、Tai, Terence Hua(2009)。Public Trust, Commercialization, and Benefit Sharing: Toward a Trustworthy Biobank in Taiwan。Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement。NY:Routledge。  new window
 
 
 
 
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