大數據與健康研究之公民參與

The Citizen Engagement of Big Data and Health Research

近年來，大型健康資料庫在實證醫學、衛生政策與商業服務的應用潛力備受矚目。然而，健康資料本身的特殊性，在隱私保障等風險議題上挑動倫理、法律與社會層面的敏感界線，引發國內外民眾對於大數據研究與應用的討論與疑慮。如何建立公共信任為大數據與健康治理的重要基礎。本研究旨在分析民眾參與對於化解科技爭議與提升科技接受度的意涵。首先指出大數據時代下，健康資料治理的社會風險性質；其次，回顧晚近歐美各國對於科技與社會關係的新思考，指出民眾參與對科技治理可能帶來的貢獻，並嘗試在科技評估與溝通過程中引進審議民主的作法。本研究建議，大數據科技與健康資料的應用發展，應正視相關人權、倫理、社會價值的衝突，有必要納入多元觀點的社會對話與風險溝通來緩解緊張關係。審議民主的實踐著重提供充分資訊下，納入公民社會、科學社群與各方利害關係人間進行對等的溝通對話，帶來的社會學習效果，可提供未來大數據治理發展的參考。

The use of health database has the potential to benefit evidence-based medicine, health policy and commercial services in recent years. However, the sensitivity of personal health records, and secondary use of data and privacy protection issues have also induced ethical, legal and social concerns. It also leads to public discussion and doubts about the big data research and its applications. The aim of the study is to clarify the meaning of citizen engagement in resolving technological controversies and increasing social acceptance. First, we point out the characteristics of social risk about health data governance. Second, we review the new perspectives on the relations between technology and society from European and North American countries. It also indicates the citizen engagement could contribute to technology governance. Many countries have introduced deliberative democracy in technology assessments and communication practices. The study recommends that the health big data and technology governance should emphasize underlying issues about human rights, ethics, and social values conflicts. It is necessary to facilitate social dialogue and risk communication to address the concerns. Deliberative democracy practices stress that, under the conditions of transparency and general public, science community and stakeholders to communicate on equal status, it would bring social learning effects and help establish public trust, which would serve the foundation of health data governance.