The TrypanoGEN research project has the scientific goal of determining why some people are more susceptible to Human African Trypanosomiasis (HAT) - or "sleeping sickness" - than others. This is achieved by creating an extensive biobank of samples from people both with and without HAT living in endemic areas, and a database of human genetic variation from Uganda, Zambia, Malawi, DRC, Cameroon, Cote d’Ivoire, Guinea & Burkina Faso.
To achieve its research objectives in a context where little genomics research has been done before and literacy on the topic is low, it was crucial that the project engaged the communities where the research would take place. This included general engagement about HAT, such as transmission, risk factors and the need to report to hospital early if infection is suspected. It also included engaging the community with the specific research activity, the reasons behind it and the approaches that would be taken.
Caption: Vincent Pius Alibu from Makerere University, Uganda presents the TrypanoGEN Project and some of the challenges, and importance, of engaging communities with genetics and genomics research.
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The main methods of engagement in this case were communication via media, radio and television; public meetings and meetings with influential parties such as religious leaders; and seminars. These approaches should always be integral to research of this kind but do not encourage the two-way exchange of knowledge that may have made the engagement more effective.
Challenges of Communication
The project involved engagement with multiple stakeholders living in sleeping sickness endemic areas and involved in HAT control, all with differing levels of education. Translating communications for the variation of languages and degrees of education among the stakeholder groups was a big challenge, especially as many languages did not have the words needed to explain the research, like "gene".
To overcome this the group had to come up with descriptors for the key words and limit what was communicated to the information relevant to the research itself, rather than giving a bigger picture of genetics and genomics more generally. This was after feedback from the community showed that the information being given was too technical and didn't seem of value to their lives.
Ideally, projects would have the resource to find creative means for engaging communities with the research and its context more fully as partial understanding makes dialogue very difficult. For example, using approaches like visualisation and metaphor or narrative and storytelling.
Without a full understanding of the science, communicating even the key information about the research becomes difficult: how do you communicate the risk associated with a genetic variant? How do you communicate the difference between a genetic variant and a health condition? And how, even, do you communicate the difference between a medical professional and a researcher? For this reason, having a community engagement professional on a project team would be a significant advantage to ensure more depth of engagement.
A key learning from the engagement work was that engagement was not just about gaining acceptance from the community, doing tests, and leaving, but that more follow up was needed. Great care needed to be taken when sharing the results of the tests and the research with the community: Who do you share genetic results with when in essence they affect the whole family? When do you do this? What information do you share?
Adding to this issue of results sharing is that there are no genetic clinics in the research area for participants to follow up with, nor are there genetic councillors available. These issues will be a problem for genomics research in many settings and work needs to be done to ensure strategies and guidance are developed and that this becomes a core aspect of the research. H3Africa is currently developing a feedback policy so that all of its projects have the guidance they need to ensure an appropriate approach to feedback from the project outset.
An open and interesting question raised at the 2017 Wellcome International Workshop was whether community engagement at the beginning of a project could make the feedback process easier. With better engagement from the start community interests would be known and accounted for within the project and expectations could be managed from the outset.
The content on this page forms part of the online report for the 2017 International Engagement Workshop "It's Complicated: navigating scientific complexity in public and community engagement". To read more about complexity in genetics and genomics engagement visit the genetics and genomics theme from the workshop. To read more about the full workshop and access the rest of the report including video presentations, discussion summaries, and tools, visit the workshop page.
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