Posted on May 11, 2020 at 9:00 AM
by Katharine Wright & Julian Sheather
Pratt et al. highlight important ways in which solidarity between researchers and communities provides both an ethical underpinning, and an ethical goal, for community engagement in global health research. We suggest that for the same reasons, the aspects of solidarity identified in the target article are essential to an understanding of what constitutes ethical research during a global health emergency, such as the current COVID-19 outbreak.
SOLIDARITY AS A BASIS FOR INTERVENTION IN GLOBAL HEALTH EMERGENCIES
In its recent report on research in such emergencies, the Nuffield Council on Bioethics categorizes health emergencies as “global” where they are unlikely to be successfully prevented, contained or managed by a single affected country, and external support is required. This focus on the need for external assistance—in contrast with the language of “global health security” and the emphasis on defensive action against external threats—is based on the moral claim that there is a duty, founded on solidarity, for countries to offer such assistance when required. While such a duty might be assumed to arise primarily in relation to low-income settings, for example through the provision of humanitarian support, the example of novel threats necessitating urgent international collaborative research highlights how such solidarity-based action can similarly arise in support of high-income countries.
Solidarity, then, provides the justification for consensual engagement in what would otherwise be the legitimate domestic concerns of a sovereign country. (In difficult cases, where the legitimacy of the state is contested, it could be argued that solidarity with a sub-population, or neglected or persecuted group, might justify intervention against the will of the state—but that is an issue beyond the scope of this commentary). Solidarity is also an essential criterion for ethical research. If people directly affected by an emergency, often in desperate straits, are to be asked to invest time and emotional energy in research—quite apart from exposing themselves to possible physical risks—then that research needs to be anchored in a deep understanding of their needs and conducted “with” not “on” participants.
SOLIDARITY UNDERPINNING ETHICAL RESEARCH—EXPRESSED THROUGH MUTUALLY RESPECTFUL RELATIONSHIPS
In emphasizing the central role of community engagement in the development of ethical research practice, the Nuffield Council report drew on contributions to an expert workshop on community engagement, co-hosted with the African coaLition for Epidemic Research, Response and Training (ALERRT) in Dakar, Senegal. One contributor powerfully articulated the need for meaningful input by affected communities throughout the research lifecycle: “When you don’t see the problem the same way, you can’t craft solutions together.” Effective community engagement, by contrast, helps bring “two worlds face to face to build consensus.”
Workshop participants, including West African social scientists and leaders of the Ebola survivor movements in Liberia and Sierra Leone, emphasized the importance of mutually respectful partnerships between researchers and communities, and the role of community engagement (described both as an “art or disposition” and as a set of processes) in achieving these. What emerged with absolute clarity in that workshop is that community engagement, however difficult in the time-pressured, emotionally-charged environment of an emergency, is crucial to respectful, ethical research—never an optional extra. Such engagement needs to start from a deep commitment to the value of local knowledge and experience, and to the local historical context. Such knowledge is essential in order to ensure that the research meets actual needs and is conducted in ways that are sensitive and respectful.
PARALLELS BETWEEN PRATT ET AL.’S ‘CONVERGENCE OF BASES AND FEATURES’ OF COMMUNITY ENGAGEMENT AND THE NUFFIELD COUNCIL’S ETHICAL COMPASS
In their summary of various accounts of solidarity in the bioethics literature, Pratt et al. helpfully identify several points of convergence. In so doing, they also distinguish between bases for solidaristic relationships (including recognition of shared moral standing, empathy, and respect), and features of those relationships (including deference, deliberative decision-making, social critique, and action). While using different language, the “ethical compass” presented in the Nuffield Council on Bioethics report resonates strongly with this synthesis. Designed to guide both policymakers and those on the ground, the compass is based on three core values: respect for others as moral equals (“equal respect”); helping reduce suffering; and fairness. Drawing on these values, it highlights a series of questions to guide the actions of policymakers and researchers alike, prompting actions parallel to the features identified by Pratt et al.
The fundamental moral importance of demonstrating respect for the equal moral agency of all persons affected by an emergency demands of researchers that they take seriously the practices, traditions, and values of those with and for whom they are working. This recognition brings with it important procedural requirements in the form of an ongoing dialog between community members and researchers throughout the research process. Only in this way can what Fricker describes as testimonial injustice—the disregarding of the testimony and knowledge of others because of their social identity (in short a failure to recognize others as moral equals)—be avoided.
The difficulty of such meaningful dialog should not be underestimated, both because of the diversity and power imbalances present in all geographical communities, and because of the time-pressured and emotionally-charged context of an emergency. While it will never be possible to consult with everyone affected by an emergency, procedural fairness demands that community engagement processes reach out to different groups present within that community, with an emphasis on reaching those who are already the least powerful and most excluded.
The third core value making up the compass—helping reduce suffering—similarly requires that those directly affected by the emergency have the opportunity to state their most important needs. In an emergency, only a limited number of studies can realistically be undertaken and the opportunity cost of one study taking place might be that a more valuable study does not—careful prioritization of research studies is required. The experience and input of the most vulnerable community members are crucial in making these difficult decisions.
COMMUNITY ENGAGEMENT METHODS—RESPONDING TO THE CHALLENGE OF EMERGENCIES
While there are strong parallels between Pratt et al.’s account of solidaristic relationships underpinning community engagement and the justification and implications of such relationships in the Nuffield Council report, the means used to achieve them are likely to differ. The various structures described by Pratt et al., such as Community Advisory Boards (CABs) and community representatives, tend to be developed as part of long-standing research plans. In an emergency, such structures are highly unlikely to be in place. Innovative community engagement practices will be required to achieve meaningful input. It will be essential to work with existing networks and structures, involving both those with a formal role (“gatekeepers” such as administrative, cultural and religious leaders) and those with less formal standing (“influencers”) who can speak for—or even better facilitate access to—other parts of the community. Examples of these influencers cited at the Dakar meeting included work-related associations (for example of women market traders or of bicycle couriers), youth groups, and traditional healers.
A degree of pragmatism will also be required: “perfect” community engagement processes cannot be conjured out of the air, and in the early stage of an emergency it is unlikely that structures to support full engagement will be in place from the start. As a minimum, however, research teams must ensure they are communicating clearly from the beginning, and commit to developing the trustworthy relationships necessary for meaningful dialog as quickly as possible. Flexibility in study design and processes will be crucial, enabling research teams to respond to input as it is received, using a model of “learning and adapting.” Sometimes the decision may have to be taken that it is simply not possible to engage sufficiently with local communities for research to be conducted ethically. However, in determining whether the possible community engagement is “good enough” for the research to go ahead, the risks and opportunity costs of not doing research should also be taken into account.
Finally, the ethical challenge for both research funders and for governments is building for the future. Emergencies are predictable to a degree—the current outbreak of COVID-19, for example, could be an example of the unknown “Disease X” included in the WHO’s R&D emergency planning. The corollary of accepting a gradualist approach to community engagement in research in emergencies is the ethical imperative on both research funders and governments to invest long-term in community structures that enable community voices to be heard.
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