Julian Sheather: Ethics of research in public health emergencies—perspectives from Guinea on the response to covid-19

Research into public health emergencies of global concern is fraught with ethical challenge. Bitter lessons learnt during successive outbreaks of Ebola Virus Disease (EVD) in West Africa suggest that these challenges can be pronounced in resource poor settings. Even before the West African Ebola epidemic of 2013-16, the Republic of Guinea had been a regional leader in research ethics. Its National Health Research Ethics Committee was set up in 1998 with a focus on the integrity of public-health related research. Reflecting on experience during the Ebola epidemic, in April 2020 Guinea established the Scientific Council for Response to covid-19 to advise the government on a range of social and biomedical aspects of the pandemic.

In February 2021, members of Guinea’s scientific and research ethics committees came together in workshops funded by the World Health Organization to reflect collectively on the conduct of research in Guinea during covid-19. These workshops provided a platform to discuss and debate: whether or not and to what extent challenges facing researchers responding to covid-19 in Guinea were different from those faced during Ebola; whether or not the Nuffield Council on Bioethics’ (NCoB) ethical compass for research in global health emergencies provided a useful tool for ethical and scientific decision-making in this particular country context. [1,2] The Nuffield compass is a relatively recent addition to the global health emergency researcher’s toolbox. Its publication in January 2020 and in multiple languages only slightly preceded announcement of the ongoing covid-19 pandemic. The compass sets out three guiding ethical principles: equal respect; helping reduce suffering; and fairness. It was developed by the NCoB’s working group on research in global health emergencies and is set out in its subsequent report. The second part of both workshops was dedicated to an open exploration of an issue that emerged as central to the Nuffield Council’s report: questions of power and inequality both within Guinea and between Guinea and resource-rich countries and institutions.

Both working groups were compelling. Experience with the 2013-16 Ebola epidemic had clearly been formative, structuring the Guinean government’s covid response in fundamental ways. Members of both committees vividly recalled how Ebola had exposed Guinea to systematic exploitation by foreign researchers. Biosamples disappeared. Research teams from overseas ignored or sought ways to get around national and international guidance on local collaboration and the management of biosamples. With their focus firmly on international biosecurity, overseas institutions set their own research agendas, with little concern for whether benefits accrued to affected populations in Guinea. Painfully and paradoxically, the value of the research—intellectual, practical, and financial—frequently flowed out of the country and back to the resource-rich countries that sponsored it.

Nevertheless, important lessons were learnt for the covid response. The Government has been able to fund some in-country pandemic research, ensuring it is focussed on Guinean needs and concerns, while all externally-funded research is now required to align with the Government’s research agenda. Alert to the risk of biosamples “disappearing” without strict oversight, Guinea now demands detailed accounts from researchers on the intended destination and use of any requested biosamples. The research ethics committee also insist on co-leadership with national researchers for any research in the country, and clear descriptions of expected shared benefits. Although significant challenges remain, international research collaborations during covid have been fairer. Whereas the Ebola outbreak was principally seen as a security threat, requiring international containment, shared global exposure to the pandemic had elicited some demonstrations of global solidarity. Global scrambles for personal protective equipment (PPE) and widespread outbreaks of vaccine nationalism nonetheless betrayed the existence of entrenched global power and wealth inequalities.

Closer to home, both Ebola and Covid threaten to deepen internal inequalities in Guinea. Enduring differences between rural and urban areas, and between the capital Conakry and other Guinean cities, risk becoming further entrenched. In the absence of any social safety net, illness can be calamitous. Where illness renders people unable to work, it can exacerbate widespread poverty, leading to malnutrition and even death. Such precariousness also makes adherence to public health interventions such as social distancing and lockdowns challenging—even potentially life threatening. 

Perhaps the biggest practical challenges to effective, ethical, and participatory research in Guinea arose in relation to community engagement—that complex set of processes and practices, techniques and procedures by which those effected by the research are appropriately engaged with it. There was consensus amongst workshop attendees that community engagement was an essential, population-level expression of respect, providing groups with opportunities to shape research agendas, participate in the choices that affect them, and voice their interests and concerns.

Effective community engagement was also critical to the conduct of research in the country. Research sponsored from overseas was particularly vulnerable to distrust emerging from colonial and neo-colonial legacies. In the absence of sensitive and informed communication with affected communities, suspicion about exploitation can rapidly turn into disengagement, hostility and even, in extremis, violence against researchers and medical workers. Outbreaks of serious infectious diseases are often—and understandably—associated with fear. If undertaken properly, community engagement could be extremely effective at managing fear and misinformation, which can be magnified by social media.

The workshops in Conakry gave a vivid account of how a LMIC like Guinea responded to covid. It was a powerful reminder of both the challenges faced and the extraordinary resourcefulness of national and local responses. But it also shone clear light on the persistence of savage global inequalities and the enduring ability of colonial legacies to drive suspicion, provoke resistance to perceived exploitation and render effective pandemic responses that much more challenging. 

Julian Sheather is ethics manager, BMA. The views he expresses in his opinion pieces are entirely his own.

Competing interests: I was a member (unpaid) of the Nuffield Council on Bioethics’ working group into the ethics of research in global health emergencies mentioned above. I was also paid a consultant’s fee by the WHO to assist in the running of the two workshops in Guinea and the writing of the subsequent report.