Tuesday, 20 September 2022
Schedule : Back to Dr Moses Egesa

Community engagement and consent process for implementing controlled human infection studies using Schistosoma mansoni in Uganda

Tue20  Sep10:25am(15 mins)
Virtual meeting


M Egesa1; A Ssali1; E Tumwesige2; M Kizza2; E Driciru3; F Luboga4; M Roestenberg5; J Seeley1; A Elliott1
1 MRC/UVRI and LSHTM Uganda Research Unit; London School of Hygiene and Tropical Medicine, Uganda;  2 MRC/UVRI and LSHTM Uganda Research Unit, Uganda;  3 MRC/UVRI and LSHTM Uganda Research Unit, Uganda; Leiden University Medical Center, The Netherlands, Uganda;  4 Uganda Virus Research Institute, Uganda, Uganda;  5 Leiden University Medical Centre, Netherlands


Preparations for controlled human infection studies using Schistosoma mansoni (CHI-S) in an endemic setting in Uganda are ongoing. A roadmap developed by a stakeholder’s meeting recommended engagement of target communities. The aim was to develop and pilot informed consent procedures that would assure good understanding of the project with potential CHI-S volunteers above 18 years from a fishing community and a tertiary education community in Uganda.


In each setting, a consultative group discussed and modified educational materials covering CHI-S developed by the research team. A mock consent process and a test of comprehension were conducted to assess understanding of CHI-S. Similar discussions and assessment with the modified educational materials were held with a test group. To explore perceptions towards, and feasibility of, participating in a CHI-S, fourteen in-depth key informant interviews and three group discussions were held.


Most participants recognised schistosomiasis as a public health problem but only a few had heard of the CHI-S and how it is conducted. Participants cited the societal benefit of the CHI-S to their families and the community they live in. It was evident that these close social networks would be key in deciding to take part in a CHI-S. Adverse effects were discussed and the worry of these was cited as a possible hindrance to taking part in a CHI-S. Most participants were undecided on the level of compensation that would be appropriate for a volunteer’s time to participate in a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S if they understand the consenting process and CHI-S study procedures. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages.

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