Tom J. Obengo

This open access casebook addresses complex and important ethical challenges arising when health-related research in conducted in the context of epidemics and pandemics. This book provides contextually-rich real-world case studies illustrating research ethics issues encountered by researchers, ethics reviewers and regulators around the globe during the COVID-19 pandemic. The accompanying commentaries outline relevant conceptual approaches and ethical considerations. These promote understanding and reflection on relevant ethical issues, ethical approaches and competing considerations in a manner supporting thoughtful evaluation of their implications for practice. As such the casebook is relevant to academic and professional audiences with an interest in global health, research ethics, and outbreaks and epidemics.

Time and resource constraints, combined with competing priorities, mean that research prioritization is a critical ethical consideration in pandemics and emergencies, given the increased need for relevant research findings to address health needs, and the multiple adverse ways that emergencies can impact capacities to conduct research. At international, national and local levels, careful consideration is needed of which research topics should be prioritized and on what grounds. This needs to take into account the ethically significant considerations that should inform prioritization; existing frameworks to guide prioritization decisions; and the consequences associated with prioritizing or de-prioritizing research. The need to prioritize research that is directly responsive to the pandemic may generate debate about which types of research should be prioritised, and within fields of research, which studies should be continued, paused, or re-oriented. In determining which research proposals may have the greatest likelihood of reducing urgent epidemic health burdens, both the nature and distribution of such burdens are key considerations. Epidemics and pandemics typically disproportionately affect the most disadvantaged and vulnerable people in society, highlighting the necessity of inclusive and responsive approaches, which evaluate not just which research approaches have the greatest potential public health benefit, but also the likelihood that they will help address inequities. Key questions also arise when determining if current studies should be de-escalated or stopped, particularly when this may result in highly compromised results. It is also important to consider what obligations arise for research communities (including funders) to pledge to taking the outcomes of research prioritisation processes into account. The case studies in this chapter prompt consideration of how qualitative research into the impacts of isolation should be prioritised, and whether and how research prioritization measures should be responsive to widespread use of traditional medicine and off-label use of medications. The cases also highlight issues that research teams may face as research priorities are re-evaluated in pandemics, including whether and how to redesign proposed research in response to the logistical challenges posed by the pandemic and evolving pandemic research priorities.