| 參考文獻 |
參考書目
一、中文專書
李瑞全（1999）。儒家生命倫理學（1版）。台北市：鵝湖出版社。
李瑞全，蔡篤堅（2008）。醫療倫理諮詢—理論與實務。台北市：五南圖書股份有限公司。
劉宏恩（2019）。基因科技與法律：生物醫學研究的自律、他律與國家規範。台北市：五南。
蔡友月、潘美玲、陳宗文（編著）（2019）。台灣的後基因體時代新科技的典範轉移與挑戰。新竹市：交大出版社。
蔡篤堅（2001）。當代台灣衛生福利政策論述的解構與重塑。台北市：唐山出版社。
蔡篤堅（2001）。實踐醫學人文的可能。台北市：唐山出版社。
二、中文論文、報章雜誌
王振寰（2010）。追趕的極限: 臺灣的經濟轉型與創新 (Vol. 1)(頁18)，巨流圖書股份有限公司。
王超群（2006年1月23日）。部落裡 沒人搞得清抽血做啥。中國時報， A10版。
台灣生醫研究倫理辦公室（2007）。建置Taiwan Biobank先期規劃ELSI記者說明會紀實。台灣生醫研究倫理與社會福利學刊，1，113-135。
台灣醫界聯盟基金會（2006年10月）。台灣生物資料庫先期規劃倫理法律分項期末報告。衛生署；中央研究院。
台灣醫界聯盟基金會（2006年10月）。台灣生物資料庫先期規劃倫理法律分項綠皮書。衛生署。
台灣醫界聯盟基金會（2008年10月）。台灣生物資料庫先期規劃倫理法律分項期末報告。行政院衛生署。
吳樹民、蔡篤堅(2005年7月11日)。基因資料庫的前提。中國時報，時論廣場。
李宗祐（2007年8月23日）。研究葛瑪蘭唾液 林媽利遭糾正。中國時報， A10版。
李宛儒、蔡友月（2018）。缺席的多元公眾：Taiwan Biobank 的建置、爭議與科學治理。臺灣社會學刊，64，49-110。
李尚仁（2017）。專家的信任危機。科學發展，538，82-84。
李瑞全（2006）。從儒家家庭倫理論生命科技之倫理議題。應用倫理研究通訊，38，3-12。
李瑞全（2007）。生物資料庫之諮詢同意倫理分析。台灣生醫倫理與社會福利學刊，1，24-38.
李瑞全（2008）。倫理諮詢理論與模式。應用倫理研究通訊，45，3-14。
林子儀（2003）。從保障隱私權的觀點論基因資訊的利用與法的規制。基因科技與法律研討會論文集（264-266頁）。學林文化事業有限公司。
林雅萍（2016）。對自主的再思考: 關係取向。應用倫理評論，61，37-57。
林瑞珠、胡中瑋 (2007)。科學理想之追其與ELSI的挑戰。台灣生醫研究倫理與社會福利學刊，1，98-112。
邱俊吉（2006年1月23日）。先導計畫2007才執行抽血 中研院生醫所：絕無枉稱健檢掩人耳目。中國時報，A10版。
高國曦、高正治、廖世傑（2005年7月）。原住民健康照護政策白皮書－一個初步的探索成果報告書。行政院衛生署；台灣原住民醫學會。
張兆恬（2018）。審議民主於生醫法上之運用：我國法之觀察。法律與生命科學，7(1)，1-16。
彭瓊芳（2007）。台灣生物資料庫治理制度內涵之探究。台灣生醫研究倫理與社會福利學刊，1，39-54。
葉俊榮、雷文玫、楊秀儀、牛惠之、張文貞（2006）。天平上的基因—民為貴、Gene 為輕（156頁）。元照出版社。
雷文玫（2019）。基因研究的告知義務及社會心理風險。載於蔡友月、潘美玲、陳宗文(主編)，台灣的後基因體時代：新科技的典範轉移與挑戰 (278-297頁)。新竹市：國立交通大學。
趙珮、何佩儒（2004年3月19日）。政府推動建置基因資料庫開發新藥推展個體化醫療。經濟日報，30版。
劉宏恩（2004）。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。台北大學法學論叢，54，45-99。
劉宏恩（2019）。精準醫療的新瓶與舊酒：大型人體生物資料庫的國際發展脈絡、爭議與國際倫理規範。載於蔡友月、潘美玲、陳宗文（主編），台灣的後基因體時代：新科技的典範轉移與挑戰（252-276頁）。新竹市：交通大學出版社。
劉靜怡（2006年1月7日）。基因資料庫所為何來？。中國時報，A15 版。
蔡友月、李宛儒（2016）。想像未來: 台灣人體生物資料庫，基因利基與國族建構。Taiwanese Sociology，32，109-169。
蔡友月、李宛儒（2019）。台灣人的基因利基：Taiwan Biobank, 科學家與國族建構。載於載於蔡友月、潘美玲、陳宗文主編，台灣的後基因體時代：新科技的典範轉移與挑戰（202-225頁）。新竹市：國立交通大學出版社。
蔡篤堅 （2004）。邁向健康生活社區化的可行模式-呼應社區營造條例的三個健康營造可能模式初探。社區發展季刊，107, 88-106。
蔡篤堅 （2007）。以社區/群為基礎的台灣生物資料庫。台灣生醫倫理與社會福利學刊，1，09-23。
蔡篤堅（1999）。臨界空間和社群想像。實踐醫學人文的可能 (170頁)。台北市：唐山出版社。
蔡篤堅（2001）。醫學史、科技發展、與專業倫理—一個醫學通識教育的初步探索。當代台灣衛生福利政策論述的解構與重塑（80頁）。台北市：唐山出版社。
蔡篤堅（2001）。醫學史、科技發展、與專業倫理—一個醫學通識教育的初步探索。載於當代台灣衛生福利政策論述的解構與重塑 (45-89頁)。台北市：唐山出版社。
蔡篤堅（2007）。以社區／群為基礎的台灣基因資料庫倫理法律社會意涵導引建議。台灣生醫研究倫理與社會福利學刊，1，9-23。
蔡篤堅（2009，6月16日）。生醫研究與社區營造如何相得益彰〔主題演講〕。生物倫理與法律研究中心討論會。新竹市，台灣。
蔡篤堅、呂佳蓁（1999）。臨界空間和社群想像：跨越多重邊界的災區重建旅程與市民社會催生實踐〔論文發表〕。「間別千年：臨界空間與社會」國際學術研討會。台中市：東海大學。
羅與恆（2016）。台灣人體生物資料庫違法蒐集疾病檢體中研院爆內鬨。壹週刊，808，34-39。
三、外文專書
Annas, G. J., & Grodin M.A.(Eds.).(1992). The Nazi Doctor and the Nuremberg Code. New York: Oxford University Press.
Beauchamp, T. L., & Childress, J. F. (2009). Principles of Biomedical ethics. New York: Oxford University press.
Corrigan, O., & Tutton, R. (Eds.). (2004). Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. Routledge.
Dresser, R. (2001). When science offers salvation: Patient advocacy and research ethics. Oxford University Press.
Elger, B. (2016). Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics?. Routledge.
Epstein, S. (1996). Impure Science: AIDS, Activism, and the Politics of Knowledge (Vol. 7). Univ of California Press.
Gottweis, H., & Petersen, A. (Eds.) (2008). Biobanks: Governance in Comparative Perspective. Routledge.
Häyry, M., Chadwick, R., Árnason, V., & Árnason, G. (2007). The Ethics and Governance of Human Genetic Databases: European Perspectives (Vol. 4). Cambridge University Press.
Karimi-Busheri, F. (Ed.). (2015). Biobanking in the 21st Century (Vol. 864). Springer.
Kindon, S., Pain, R., & Kesby, M. (2007). Participatory Action Research Approaches and Methods-Connecting People, Participation and Place. Abingdon: Routledge.
Mackenzie, C., & Stoljar, N. (Eds.). (2000). Relational Autonomy: Feminist Perspectives on Autonomy, agency, and the Social Self. Oxford University Press, USA.
Manson, N. C., & O′Neill, O. (2007). Rethinking Informed Consent in Bioethics. Cambridge University Press.
O′neill, O. (2002). A Question of Trust: The BBC Reith Lectures 2002. Cambridge University Press.
O′neill, O. (2002). Autonomy and Trust in Bioethics. Cambridge University Press.
Russell, A. M., & Vogler, J. (Eds.). (2000). The International Politics of Biotechnology: Investigating Global Futures. Manchester University Press.
Ruzek, S. B. (1978). The Women′s Health Movement: Feminist Alternatives to Medical Control. New York: Praeger.
Sherwin, S. (1998). The politics of women′s health: Exploring agency and autonomy. Temple University Press.
Solbakk, J., Holm, Søren, & Hofmann, Bjørn (Eds.), The Ethics of Research Biobanking. Springer, Boston, MA.
Solomon, R. C., & Flores, F. (2003). Building trust: In business, politics, relationships, and life. Oxford University Press.
Taylor, M. (2012). Genetic Data and the Law: A Critical Perspective on Privacy Protection (Vol. 16). Cambridge University Press.
Titmuss, Richard M. (2018). The gift relationship: From human blood to social policy. Policy Press.
Widdows, H. (2013). The connected self: the ethics and governance of the genetic individual. Cambridge University Press.
Widdows, H. (2013). The Connected Self: The Ethics and Governance of the Genetic Individual. Cambridge University Press.
三、外文期刊、專書論文、會議論文
Allen, J., & McNamara, B. (2011). Reconsidering the value of consent in biobank research. Bioethics, 25(3), 155-166.
Anderson, A. (2002). In search of the Holy Grail: media discourse and the new human genetics. New Genetics and Society, 21(3), 327-337.
Árnason, A., & Simpson, B. (2003). Refractions through culture: the new genomics in Iceland. Ethnos, 68(4), 533-553.
Árnason, V., & Árnason, G. (2004). Informed Democratic Consent? The Case of The Icelandic Database. TRAMES, 8(58/53), 1/2, 164-177.
Beier K, Schweda M, Schicktanz S. (2019). Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research. BMC Med Inform Decision Mak, 19(1):90.
Benjamin, R. (2009). A lab of their own: Genomic sovereignty as postcolonial science policy. Policy and Society, 28(4), 341-355.
Beresford, P. (2019). Public participation in health and social care: exploring the co-production of knowledge. Frontiers in Sociology, 3, 41.
Bledsoe, M. J. (2017). Ethical legal and social issues of biobanking: past, present, and future. Biopreservation and biobanking, 15(2), 142-147.
Boltanski, L., & Thévenot, L. (2006). On justification: Economies of worth(p.278). Princeton University Press.
Bragdon, Susan, Kathryn Garforth, & John E. Haapala Jr. (2008). Safeguarding biodiversity: the convention on biological diversity (CBD). In Tansey, G., & Rajotte, T. (Eds.) The Future Control of Food: A Guide to International Negotiations and Rules on Intellectual Property, Biodiversity and Food Security (pp.82-114). London: Earthscan.
Bredenoord, A. L., Onland‐Moret, N. C., & Van Delden, J. J. (2011). Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Human mutation, 32(8), 861-867.
Brock, D. W. (2001). Genetics and confidentiality. American Journal of Bioethics, 1(3), 34–35.
Brownsword, R. (2009). Friends, Romans, Countrymen: Is There a Universal Right to Identity? Law, Innovation and Technology, 1(2), 223-249.
Budin-Ljøsne, I., Teare, H. J.A., Kaye, J., Beck, S., Bentzen, H. B., Caenazzo, L., Collett, C., D’Abramo, F., Felzmann, H., Finlay, T., Javaid, M.K., Jones, E., Katić, V., Simpson, A., & Mascalzoni, D. (2017). Dynamic consent: a potential solution to some of the challenges of modern biomedical research. BMC medical ethics, 18, 1-10.
Busby (2004). Blood donation for genetic research: what can we learn from donors’ narratives?. In Corrigan, O., & Tutton, R. (Eds.), Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. Genetic databases (pp. 49-66). Routledge.
Busby, H., & Martin, P. (2006). Biobanks, national identity and imagined communities: The case of UK biobank. Science as Culture, 15(3), 237–251.
Caenazzo, L., & Tozzo, P. (2016). Biobanks and public health: a new challenge for public engagement and trust. Journal of Biomedical and Clinical Research, 9(1), 17-20.
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Caron-Flinterman, J. F., Broers’, J. E., & Bunders, J. F. (2007). Patient partnership in decision-making on biomedical research: changing the network. Science, technology, & human values, 32(3), 339-368.
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Chalmers, D., Burgess, M., Edwards, K., Kaye, J., Meslin, E. M., & Nicol, D. (2015). Marking shifts in human research ethics in the development of biobanking. Public Health Ethics, 8(1), 63-71.
Chalmers, D., Nicol, D., Kaye, J., Bell J., Campbell, A. Ho, C. W. L., Kato, K., Minari, J., Ho, CH, Mitchell, C., Molnár-Gábor, F., Otlowski, M., Thiel, D., Fullerton, S. M., & Whitton, T. (2016). Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC medical ethics, 17(1), 1-14.
Clift, R. (2012). Going Public: Risk, Trust and Public Understanding of Nanotechnologies. In Nanotechnology: Risk, Ethics and Law (pp. 196-212). University of Surrey.
Concannon, T. W., Fuster, M., Saunders, T., Patel, K., Wong, J. B., Leslie, L. K., & Lau, J. (2014). A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of general internal medicine, 29, 1692-1701.
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Harris, J. R., Burton, P., Knoppers, B. M., Lindpaintner, K., Bledsoe, M., Brookes, A. J., Budin-Ljøsne, I., Chisholm, R., Cox, D., Deschênes, M., Fortier, I., Hainaut, P., Hewitt, R., Kaye, J., Litton, JE., Metspalu, A, Ollier, B., Palmer, L.J., Palotie, A…, & Zatloukal, K.(2012). Toward a roadmap in global biobanking for health. European Journal of Human Genetics, 20(11), 1105-1111.
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Hoeyer, K., Olofsson, B. O., Mjörndal, T., & Lynöe, N. (2004). Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scandinavian journal of public health, 32(3), 224-229.
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Kaye, J., Terry, S. F., Juengst, E., Coy, S., Harris, J. R., Chalmers, D., ... & Cambon-Thomsen, A. (2018). Including all voices in international data-sharing governance. Human Genomics, 12, 1-6.
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Knoppers, B. M., & Chadwick, R. (2005). Human genetic research: emerging trends in ethics. Nature Reviews Genetics, 6(1), 75-79.
Knoppers, B. M., Rioux, A., & Zawati, M. N. H. (2013). Pediatric Research ‘Personalized’? International Perspectives on the Return of Results. Personalized Medicine, 10(1), 89-95.
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