When communities are really in control: ethical issues surrounding community mobilisation for dengue prevention in Mexico and Nicaragua

Abstract

We discuss two ethical issues raised by Camino Verde, a 2011–2012 cluster-randomised controlled trial in Mexico and Nicaragua, that reduced dengue risk though community mobilisation. The issues arise from the approach adopted by the intervention, one called Socialisation of Evidence for Participatory Action. Community volunteer teams informed householders of evidence about dengue, its costs and the life-cycle of Aedes aegypti mosquitoes, while showing them the mosquito larvae in their own water receptacles, without prescribing solutions. Each community responded in an informed manner but on its own terms. The approach involves partnerships with communities, presenting evidence in a way that brings conflicting views and interests to the surface and encourages communities themselves to deal with the resulting tensions.One such tension is that between individual and community rights. This tension can be resolved creatively in concrete day-to-day circumstances provided those seeking to persuade their neighbours to join in efforts to benefit community health do so in an atmosphere of dialogue and with respect for personal autonomy.A second tension arises between researchers’ responsibilities for ethical conduct of research and community autonomy in the conduct of an intervention. An ethic of respect for individual and community autonomy must infuse community intervention research from its inception, because as researchers succeed in fostering community self-determination their direct influence in ethical matters diminishes. Trial registration: ISRCTN 27581154

Participatory research—A modernizing science for primary health care

“…Particularly stringent in randomized controlled trials where informed consent is a central concern, ethical codes play out very differently in conventional researcher‐led and in participatory research—where stakeholders essentially choose what they want to do . In participatory research, there are seldom concerns about placebos and issues of withholding interventions in controls can be settled by randomizing the delay among all eligible participants, as in a stepped wedge design.…”

DengueChat: A Social and Software Platform for Community-based Arbovirus Vector Control

“…We used the SEPA concept of "socialization of evidence for participatory action" to emphasize the importance of evidence-based discussions to motivate residents to take actions regarding vector control. 35,42,43 These discussions consisted of various forms of "chat" that residents have with each other and with nonparticipants (e.g., health officials and politicians) about the evidence of mosquito infestation that the brigadistas find. Participants used the term socializaci on for the in-person assembly they conducted after each session of house visits (Supplemental Figure 6); during the assembly, brigade members reported to each other what they found, how they related to residents, what problems they encountered, their assessment of neighborhood risk, and other information.…”

Citizen Science Mosquito Surveillance by Ad Hoc Observation Using the iNaturalist Platform

“…The potential of iNaturalist for detecting vector species was also verified in Europe, North America, North Africa and the Middle East [19], and the results indicated that the iNaturalist platform could complement existing vector surveillance data. Citizen science initiatives on mosquito surveillance are also emerging in tropical countries and areas where dengue and malaria are endemic [22,56,57], and ethical issues were discussed in a community-based program in Nicaragua and Mexico [58]. As ethical discussions underlining communitybased research have shown, researchers should ensure that individuals and communities have the autonomy to monitor and control the vectors in their properties and have a safe space for a dialogue focusing on mutual respect and community health [58].…”

“…Citizen science initiatives on mosquito surveillance are also emerging in tropical countries and areas where dengue and malaria are endemic [22,56,57], and ethical issues were discussed in a community-based program in Nicaragua and Mexico [58]. As ethical discussions underlining communitybased research have shown, researchers should ensure that individuals and communities have the autonomy to monitor and control the vectors in their properties and have a safe space for a dialogue focusing on mutual respect and community health [58]. Future studies regarding the utility of iNaturalist for public health should consider the ethical issues of vector surveillance in impoverished locations where diseases such as dengue and malaria are a major problem.…”