探討我國基因資料庫(Taiwan Biobank)建置的規範現況與未來展望 －以英國、冰島及日本法治為中心

• Main Authors: 卓文琳, Cho, Wen-Lin
• Other Authors: 法律學系, 陳俊仁, Chen, Chun-Jen
• Format: Thesis
• Language: Chinese; English
• Published: 2012
• Subjects: 基因資料庫; 基因科技; 隱私權保護; 冰島; 英國; 日本; Genetic database; genetic development; privacy; Iceland; the United Kingdom; Japan
• Online Access: http://ir.lib.ncku.edu.tw/handle/987654321/123572; http://ir.lib.ncku.edu.tw/bitstream/987654321/123572/-1/index.html

生物技術的迅速發展，使得保護個人基因隱私也成為各國政府的新課題。各國對於研擬維護個人資訊的新方式也不相同，可能另訂保護基因隱私權的相關法律，或是從既有的個人資訊保護體制上，透過解釋的方式因應新科技帶來的威脅。國內於法律上對於個人資料的保護，從電腦個人資料保護法的相關規定為基礎。針對基因資料庫先行計畫的開展，引發重大倫理瑕疵爭議及原住民團體的關注，在人權團體的介入下暫時擱置，也促使其後的說明會熱烈討論，認為此項研究計畫應讓公民依興趣參與並充分認知，建立審議與監督機制，才能讓台灣基因資料庫贏得國人信賴。針對基因研究涉及保密義務與公共健康、專利權與經濟報酬、賠償救濟與利益分享、產業發展課題，現行法規不足，大多落在民、刑法範疇，促使法律界推動「人體組織法草案」、「基因資訊保護法草案」等草案，期待在基礎傳統法律的規範下，能有專屬於基因資訊保護的規定。 基因資料庫在倫理及法律上的爭議相當廣泛，且無論是自由權、隱私權、自主權或告知後同意原則等，都不是絕對的權利，而是需要政府機構與研究單位及基因提供者間的調和，無論是法律學者或是人權團體，都不能否定基因科技的發展可能帶來的利益，就此利益所引發的議題如利益歸屬等問題，雖然我國基因資料庫尚處於建置階段，導致國內目前討論相關議題較少，但可從整理國際間的經驗中提供未來研擬相關政策的建議。 The rapid development of biotechnology have made the protection of personal genetic privacy become a new topic of government’s management For countries develope new ways to safeguard personal information is not the same may be another set of laws to protect genetic privacy or protection of personal information from the existing system on the way through the explanation in response to the threat posed by new technology In domestic law for the protection of personal information from computer-related personal data protection laws based on the provisions Genetic database for the first plan to carry out cause major ethical defect disputes and indigenous organizations concerned the intervention of the human rights groups put on hold but also will promote lively discussion followed the instructions that the program should allow the citizens of this study interest in participation and full recognition by the establishment of monitoring mechanisms to consider and to make people of Taiwan to win trust of genetic databases For genetic research involves the obligation of confidentiality and public health patents and economic rewards compensation benefits and benefit-sharing industry issues the current lack of regulations mostly on the people criminal law to promote the legal profession to promote the "draft law on human tissue " "draft law on the Protection of genetic information "and the draft look at the basic norms of traditional law to have exclusive genetic information protection requirements Genetic databases in the ethical and legal controversy is quite extensive and whether it is right to freedom privacy autonomy or the principle of informed consent are not absolute rights but need to research institutions and government agencies and among providers of genetic harmonic both legal scholars and human rights groups genetic technology can not deny the potential benefits of the development issues arising from this interest such as vested interests and other issues although our database is still in the gene build stage led to less relevant issues being discussed but from the experience of the international order to provide future develop relevant policy recommendations