健康資料再利用與資料治理──寫在憲法法庭健保資料庫案判決之後

Re-using Health Data and Data Governance - Reflections Following the Constitutional Court Decision on the National Health Insurance Database Case

就憲法法庭健保資料庫判決為延伸，本文認為關於我國資訊法制問題癥結，在於現行法制並未滿足健康資料領域資料治理基本要求。基於此，本文之目的在探索就未來臺灣科研學界對各類資料庫之個人資料為延伸利用，所需要的資料治理法制。
解決之道，首先，本文認為有關機關應儘速地完備延宕已久之科研資料庫治理法制，而揮別長久來僅施以口惠之階段。其次，本文認為資料治理之核心在於安置資料信託概念，而資料信託之概念可由對於資料近用與資料共享等資料應用行為中，以透過建構資料中介者對於資料當事人信任關係，令其負擔基於資料應用信任關係之資料信託責任來完成。以人為本之參與式治理與信任關係之維持，具有積極之關聯性，而此種信任關係的推增，則需要良好的資料信託治理，例如將透明原則與課責原則預先安置於治理的法制框架設計當中，並在整體資料利用週期當中，使資料當事人能自初期起即能有效地連續參與。

The crux of the issue, as outlined in Constitutional Interpretation No. 13 of the 111th year of the Constitutional Court, regarding the legal framework for information in Taiwan, is that the current legal system does not satisfy the fundamental requirements for data governance in the healthcare sector. With this in mind, the purpose of this essay is to explore the legal framework for data governance that will be required in the future for the extended use of personal data in various databases within Formosan scientific research community.
The solution lies in the relevant authorities expeditiously completing the long overdue legal framework for research database governance, instead of merely offering promises. Secondly, this article contends that the heart of data governance is establishing the concept of data trust, which can be achieved by creating a trusted relationship between data intermediaries and data subjects through their data access and sharing behaviours. This can be achieved by implementing a data trust responsibility based on the trust relationship in data application. Participatory governance and trust relationships based on people-centred principles have a positive correlation, and enhancing such trust relationships necessitates robust data trust governance, such as embedding transparency and accountability principles in the legal framework design for governance, and enabling data subjects to participate effectively throughout the entire data usage cycle.