Sat, Dec 06, 2025 page8

• Health data law lacks vision and democracy

  • By Y. Tony Yang
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  The legislature has passed the long-awaited National Health Insurance Data Management Act (全民健康保險資料管理條例), fulfilling the Constitutional Court’s August 2022 order to establish opt-out rights for the use of health records for research purposes.

  The law arrived within the court’s three-year deadline and includes penalties for data thieves and misusers. Officials will celebrate this as balancing privacy with research utility.

  However, did Taiwan solve the right problem?

  The law grants individuals 30 days to opt out of nonmedical uses of their National Health Insurance (NHI) data, with failure to act within the window considered to be consent.

  The legislation’s core assumption is that participation in research should be the default and autonomy is satisfied by creating an exit. This raises questions about autonomy.

  While the EU’s General Data Protection Regulation permits processing of health data for research, it typically requires either explicit consent or robust public-interest safeguards with independent oversight. Taiwan’s approach treats inertia as authorization, a legal fiction that undermines the informed autonomy that the Constitutional Court sought to protect.

  The 30-day window makes the problem acute. In a society where health data governance remains poorly understood, expecting millions of people to navigate bureaucratic opt-out procedures transforms a constitutional right into an administrative hurdle.

  Research from other jurisdictions demonstrates that opt-out models depend on the inertia of the public and assume majority willingness to share data — assumptions that erode public trust when tested.

  What makes this disappointing is the missed opportunity. The NHI Research Database is extraordinary — covering 99.9 percent of the population and comprising more than 70 billion medical records, it has been used in more than 8,400 peer-reviewed publications and serves as a global model for real-world evidence. The database represents the accumulated health experience of an entire society, a collective asset built through compulsory participation in universal healthcare. Few democracies have such a resource; fewer still have squandered the chance to govern it democratically.

  Taiwan could have pioneered a participatory model — one in which individuals could meaningfully opt in to specific research priorities, receive feedback on how their data contributed to discoveries or even help govern the research agenda. Such an approach would have distinguished Taiwan from authoritarian neighbors who treat health data as state property.

  The law’s severe penalties address concerns about breaches, but heavy punishments for bad actors do not address whether routine, authorized research access adequately protects individual dignity.

  The exceptions are equally telling: Authorities can override opt-out requests when “legally obligated” or to “prevent imminent danger.”

  The new law is competent legislation responding to a judicial mandate, but competence is not vision.

  As Taiwan positions itself as a leader in digital health research and innovation, it should aspire to more than procedural adequacy. The next reform should ask not whether people can exit the system, but whether they can enter it as partners.

  Until then, the nation has complied with the letter of the Constitutional Court’s ruling, while perhaps missing its spirit, which is that in a democracy, the public deserves genuine control over their most intimate information.

  Y. Tony Yang is an endowed professor at George Washington University and a visiting professor at National Taiwan University’s College of Law.
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