A broad cross-section of international guidelines and reports have identified community engagement activities as an essential part of any public health project seeking to carry out research involving participants in a manner that is inclusive, responsible, and ethical (1–3). This is particularly true with regards to projects seeking to adopt a co-development approach (4), in which researchers engage in a collaborative process of jointly designing with stakeholders a research pathway and its resultant intervention to reach a common goal (5). This entails pro-active dialogue at many different project stages and some measure of shared responsibility for decision-making. It therefore goes beyond many common relational paradigms between researchers and stakeholders centered on sharing information and seeking acceptance (1, 6).
These issues are particularly relevant to international research partnerships, in which there is a high likelihood of disparities between participants with regards to perceptions, access to resources, and scientific literacy levels (7). In these contexts, language barriers can present some of the most significant obstacles to carrying out effective community engagement (8, 9). This is especially true when the research involves new technologies and techniques, for which established consensus terminology may not yet exist in all languages (10).
This proved to be the case for Target Malaria, an international not-for-profit research consortium comprised of research institutions from North America, Western Europe, and Sub-Saharan Africa, including teams at four partner institutions in Burkina Faso, Mali, Uganda, and Ghana. Target Malaria is seeking to develop and share a gene-drive based technology to reduce the population of malaria vectors which will complement current and emerging approaches and thereby reduce transmission of the disease in Sub-Saharan Africa (11). With approximately 228 million cases of infections and nearly half a million deaths registered in 2018, malaria remains a priority public health problem, with Africa suffering by far the greatest burden (12). Given the stalled progress in reducing incidence of the disease over the period 2016-18, current methods of combatting malaria will not be enough to allow the world to meet its commitment to controlling the disease under the United Nations Sustainable Development Goal 3 on health (“Ensure healthy lives and promote well-being for all at all ages”) and its specific target “By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases” (13). There is therefore a need for innovative new tools to complement the already existing ones (14, 15).
Target Malaria follows a phased approach in the development of its technology, with gene drive mosquitoes being the ultimate phase as a self-sustaining strain able to spread the modification to the target population. Preceding phases include non-gene drive strains of mosquitoes that are therefore self-limiting. Those mosquitoes are genetically modified, but the modification is not passed at a preferential rate to the progeny and does not persist in the environment.
The project has committed to a co-development approach (16) with local communities and stakeholders (in addition to the co-development between researchers of different backgrounds), as a means of ensuring their concerns and expectations are taken into account for project activities, and that the future technology responds to their actual needs (4). To achieve this, engagement and outreach efforts must take place in local languages, without which engagement could not be considered meaningful (17).
In order to do this, it was necessary to develop glossaries translating key terms related to genetic modification, gene drives, gene editing, entomology, field evaluation, and other relevant aspects of the project into local languages of the field sites where the project has activities, in a manner appropriate to, and accessible for, all local stakeholders. This enabled the project to create consistency in communication relating to scientific terminology, to improve stakeholder understanding of the project activities and to ensure that any eventual consent (at individual level) and acceptance (at community level) are effectively informed.
When reflecting about this process and what it has achieved, there is a value in analyzing the specificities of the co-development approach taken by the teams to establish these glossaries in the various local languages. This not only provides an example of developing
valuable resources for any future related research in comparable socio-linguistic contexts but also about how the process of doing so can be part of the engagement itself. This paper is therefore an attempt to address the relative paucity of well-documented examples of linguistic work informing engagement in international public health collaborative research (1, 18).
Literature Review
The need for local language tools and the challenges inherent in ensuring that they can communicate new or complex scientific concepts to stakeholders with widely varying degrees of literacy and knowledge is extensively documented in the field of stakeholder engagement for medical research (8, 19–22). In the Sub-Saharan African Region, documented efforts to develop these tools have mostly been published in relation to research dealing with malaria, HIV, and especially genetic and genomics studies (23).
Among the most detailed and instructive of these is the experience of the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya (7) which described a process by which researchers translated informed consent forms, originally drafted in English, into Kiswahili, through workshopping and conceptual elaboration, and highlighted the challenges that arose during these activities, and those which yet remain to be overcome. Their analysis however remained highly context specific, and they did not attempt to distill their findings into more broadly applicable good practices, even if such exercises would always need to be tailored for a particular context. Also of particular value are the writings of Traore et al. (24) and Tindana et al. (10) on the process of collecting and analyzing the views of MalariaGEN participants in Mali and Ghana. This entailed the development of interview guides in French and Bamanankan. Traore et al. presents the lengthy process through which the Bamanankan versions were produced, involving expert translators and support from the National Institute of Local Languages, as well as the iterative exercises after they had been developed, in which interview transcripts were back-translated and compared to ensure consistency and clarity in the terminology the research team used. This paper highlights the fact that despite these resources, engagement was not straightforward, and confusion and misconceptions remained due to conceptual barriers of understanding among stakeholders.
There are many other documented cases of the development of local language materials to facilitate stakeholder engagement in settings in which substantial conceptual and linguistic barriers exist. These include HIV prevention trials in India, Thailand, South Africa & Canada (18), informed consent processes in Ghana (25)(26) and vaccine trials in Africa (27) with regards to several African case studies. However, publications to date do not provide a detailed discussion of the ways in which the development of these tools may be carried out, nor attempt to draw up a normative framework of good practices on the basis of these experiences.