Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not just to build unidirectional (...) trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems. (shrink)

As the COVID-19 pandemic rages on, this June 2021 issue of the JME contains several articles addressing pandemic-related ethical issues, including, discrimination against persons with disabilities,1 collective moral resilience,2 and stress in medical students due to COVID-19.3 It also contains a critical appraisal of the most recent WHO guidance document on the management of ethical issues during an infectious disease outbreak.4 This June issue of JME also addresses several important clinical ethics issues: covert administration of medication in food,5 educational pelvic (...) exams under anesthesia,6 consent to cancer screening,7 care of critically ill newborns when the birth mother is unwell,8–10 and ethical considerations related to recruiting migrant workers for clinical trials.11 Perhaps what is most unique about this issue is its Feature …. (shrink)

The COVID-19 pandemic posed many ethical and practical challenges for academic research. Some of these have been documented, particularly in relation to health research, but less attention has been paid to the dilemmas encountered by educational and social science research. Given that pandemics are predicted to be more frequent, it is vital to understand how to continue crucial research in schools and other learning communities. This article therefore focuses specifically on research ethics in educational and social science during the pandemic (...) of 2020–2022. The research involved interviews and workshops with University College London (UCL) academics, professional staff and graduate students and encompassed those involved in reviewing ethics applications, researchers dealing with ethics in projects that continued despite disruptions caused by COVID-19, and successful research projects specifically designed to study the effects of COVID-19 in various contexts. The article discusses some of the crucial knowledge and practical experiences that were accumulated. The operational and epistemological lessons learned from this particular institution may have wider relevance to research ethics processes in higher education environments where academics and students are grappling with post-COVID-19 ethical dilemmas and inform broader debates about how research institutions can build institutional knowledge to improve practices of ethics review at the times of health emergencies in future. Our evidence points to the significance of inter- and multidisciplinary, collaborative approaches that flatten institutional hierarchies and to the crucial role played by professional staff. In addition, we argue that ethics review processes must be underpinned by critical debates about wider issues of unequal power relationships between research partners, the nature of knowledge production, ownership and utilisation. To enhance equity and epistemic justice in research practices, ethics education should be an ongoing integral part of research ethics within research institutions. (shrink)