Research ethics is a dynamic and evolving domain, continually shaped by developments in scientific practice and technological innovation. The adoption of the Declaration of Taipei (DoT) and recent revisions to the Declaration of Helsinki (DoH) reflect the growing need to engage with the ethical challenges posed by data-intensive biomedical research. This article examines a decade-long legal dispute in Taiwan concerning the secondary use of National Health Insurance (NHI) data for research purposes, illustrating the ethical tension between the protection of individual data privacy and the promotion of socially valuable research. A central concern addressed here is whether there exists a moral obligation to participate in research, particularly in contexts involving minimal risk and substantial public benefit. While the protection of human participants remains a foundational principle of contemporary research ethics, the authors argue that an uncritical application of protective norms may hinder the advancement of health-related knowledge. In response, we propose a recalibration of the ethical framework—one that recognizes not only the rights of individuals but also their responsibilities as members of a solidaristic community. In this view, participation in low-risk research, including studies using health data and biospecimens, may constitute a civic duty grounded in reciprocity and public interest.

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The DoH, the DoT, and the Duty to Participate in Data Research: A Case Reflection from Taiwan

  • Daniel Fu-Chang Tsai,
  • Yu-Chen Juang

摘要

Research ethics is a dynamic and evolving domain, continually shaped by developments in scientific practice and technological innovation. The adoption of the Declaration of Taipei (DoT) and recent revisions to the Declaration of Helsinki (DoH) reflect the growing need to engage with the ethical challenges posed by data-intensive biomedical research. This article examines a decade-long legal dispute in Taiwan concerning the secondary use of National Health Insurance (NHI) data for research purposes, illustrating the ethical tension between the protection of individual data privacy and the promotion of socially valuable research. A central concern addressed here is whether there exists a moral obligation to participate in research, particularly in contexts involving minimal risk and substantial public benefit. While the protection of human participants remains a foundational principle of contemporary research ethics, the authors argue that an uncritical application of protective norms may hinder the advancement of health-related knowledge. In response, we propose a recalibration of the ethical framework—one that recognizes not only the rights of individuals but also their responsibilities as members of a solidaristic community. In this view, participation in low-risk research, including studies using health data and biospecimens, may constitute a civic duty grounded in reciprocity and public interest.