Afterword

In Susan Bull, Michael Parker, Joseph Ali, Monique Jonas, Vasantha Muthuswamy, Carla Saenz, Maxwell J. Smith, Teck Chuan Voo, Katharine Wright & Jantina de Vries (eds.), Research Ethics in Epidemics and Pandemics: A Casebook. Springer Verlag. pp. 193-201 (2023)
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Abstract

This casebook offers a window into important aspects of the ethical landscapes that researchers, communities, health professionals, policy makers – and ethicists – had to navigate during the first 15 months of the COVID-19 pandemic. The cases presented in this casebook are inevitably a selection informed by and constrained by the processes through which they were sought, and by the pandemic itself. Additional cases could valuably complement all the thematic chapters in this casebook. In addition, this casebook calls for a broader approach to research ethics, both in terms of the issues to be considered, and the range of stakeholders having ethical responsibilities relating to the conduct of research. However a broad range of stakeholders have differing values, remits, authorities and capacities to exercise power in pandemic contexts, and in many situations, exercises of power, and their impact on research, are not direct and explicit. As such they are less amenable to clear representation in real-world cases, highlighting the importance of complementing discussions of the cases in this casebook with conceptual literature. Reflection on the research that has not been conducted is also critical. The COVID-19 pandemic has reemphasized that global health emergencies are never only about health. The wide-ranging impacts of the pandemic on economies, employment, education and a range of socially and culturally important activities, accentuates the importance of an equally comprehensive research agenda, which goes beyond a narrow conception of ‘health’, and addresses a broad range of pandemic impacts on populations. A further way in which we believe debate on pandemic research ethics both could and should be broadened is in relation to aspects of pandemic science beyond those relating to ‘response’. Inevitably, in the context of an emerging and continuing pandemic, scientific research attention has tended to focus on interventions that can enable more effective responses. However pandemic science can be thought of as divisible into four interdependent and overlapping domains: prevention, preparedness, response, and recovery. Research is essential to the development, evaluation, and deployment of interventions in each of these domains and effective, valuable, trustworthy and trusted research will require ethical questions to be identified and addressed. This chapter concludes by inviting the connection of additional cases and conceptual resources to this casebook, to enhance and expand the themes and topics covered.

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