加拿大英屬哥倫比亞省健康資訊近用之法制與社會溝通機制研析

隨著科技日新月異，資料儲存型態逐漸自紙本轉向電子化，使得知識的傳遞更為快速便捷。然而這樣的變革，在發展生技研發活動上，卻因牽涉敏感性個人健康資料保護，而引起社會上強烈的法律倫理爭議。欲解決此類爭議，除了自體制內的法規範層面切入，輔以體制外的社會溝通，瞭解社會上不同族群對生技議題爭議的觀點亦相當重要。本文以加拿大各省中，個人資訊保護法制最為完善的英屬哥倫比亞省為案例，首先研析該省的健康資料近用規範架構，其次延伸討論該省的社會溝通實踐，觀察該省建置生物基因資料庫時所進行的公眾審議論壇，將體制外的社會溝通與體制內的法律規範作比較串連。研究結果顯示，英屬哥倫比亞省在是否批准近用個人健康資訊，區分非商業之研究目的與商業目的，商業目的不得近用個人健康資訊；在是否予以隱私權保護上，亦區分可識別與非可識別的個人資訊，非可識別的個人資訊不納入規範範疇。然而隨著創新研究型態和科技發展的轉變，此種規範邏輯需作調整。其次，該省生物基因資料庫公眾審議論壇結論確實反應至具體政策，並達到公民教育擴散的社會溝通效果。惟公眾審議論壇欲形成具體共識，必須在揭露多元觀點的程度上做出價值取捨。

關鍵字

生物基因資料庫；醫療健康資訊；個人健康資訊近用與隱私保護法；社會溝通；審議式民主；公共審議；公民參與

並列摘要

As a result of the transformation of data storage type, from paper work to digitlized data, the knowledge transmission is faster and more convenience than before. Nevertheless, this trend might result in the legal ethical debate about the personal health information protection when we promote the development of biotechnical research. To resolve the dispute on sensitive personal health information, we have to use not only legislation systems, but also a social communication mechanisms to explore the values and interests that need to be concerned in policy-making. This study takes as example of British Columbia(BC), a province which has built upthe most complete personal information regulatory in Canada. The article begins with discussing British Columbia's personal health information access regulatory framework. As for the further analysis, this study observes the BC Biobank Deliberation, which was held to engage the public in biobanking, and attempts to discover the connection between regulation and social communication. The result of the regulation on biobanking and health information access in British Columbia shows that the privacy protection regulation is only applied to an identifiable individual's recorded information, and excludes the application to the non-identifiable information and human biological materials. Moreover, the regulation restricts the health information access from commercial purposes. Nevertheless, above two limitations have to be modified while adopting the transmission of collaborative research and technology development in the future. Furthermore, besides the adoption of its conclusion by BC government in the policy-making, the most valuable achievement of BC Biobank Delibration was having remarkably improved upon the citizen participation. Eventually, in order to reach a specific consensus, it is necessary to assess the dgree of plural perspectives exploring.

並列關鍵字

Biobank ； medical information ； Personal Health Information Access and Protection Act of Privacy ； E-Health Act ； social communication ； deliberative democracy ； public deliberation ； citizen participation

參考文獻

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