Boundaries Between Research, Surveillance and Monitored Emergency Use

VOO, TECK CHUAN; MASTROLEO, IGNACIO

Research ethics in epidemics and pandemics: a casebook

Springer Nature

Año: 2024;

In the face of outbreaks, epidemics, and pandemics (OEPs), public health responses demand a delicate balance between non-research activities, such as prevention and control interventions, and research endeavors aimed at generating generalizable knowledge. This chapter examines the ethical complexities surrounding the delineation between research and non-research public health activities, particularly focusing on surveillance and the use of unproven interventions during OEPs. Drawing insights from case studies, including the COVID-19 pandemic, it elucidates the challenges in demarcating these activities and underscores the critical importance of clear boundaries. The blurring of lines between research and non-research activities stems from shared methodologies and the repurposing of resources and infrastructure during emergencies. For instance, surveillance and research often employ similar data collection methods, while existing research databases may be utilized for surveillance purposes. This conflation necessitates a nuanced understanding of ethical considerations, especially regarding privacy and data protection. Moreover, the coordination between non-research and research activities is essential for an effective and ethical response to OEPs. The chapter delves into the complexities of determining whether a non-research activity should be conducted as research and vice versa, highlighting the need for careful ethical deliberation. Ultimately, this chapter contributes key considerations for addressing the ethical challenges inherent in navigating the boundaries between research and non-research activities during public health emergencies. By examining these issues through the lens of real-world case studies, it provides valuable insights for policymakers, practitioners, and researchers involved in OEP responses. [ChatGPT summary of introduction 21/02/24, revised by IM]