Ethical and practical considerations arising from community consultation on implementing controlled human infection studies using Schistosoma mansoni in Uganda
Global Bioethics, vol. 33, pp. 78–102
Abstract
(CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a mock consent process was conducted. Fourteen in-depth key informant interviews and three group discussions were held to explore perceptions towards participating in a CHI-S. Most of the participants had not heard of the CHI-S. Willingness to take part depended on understanding the study procedures and the consenting process. Close social networks were key in deciding to take part. The worry of adverse effects was cited as a possible hindrance to taking part. Volunteer time compensation was unclear for a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages.
Authors 9
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Moses Egesa corresponding
London School of Hygiene & Tropical Medicine · MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Department of Infection Biology, London School of Hygiene and Tropical Medicine, London, UK
Immunomodulation and Vaccines Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
Uganda Virus Research Institute, Entebbe, Uganda
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MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Social Aspects of Health Across the Life-Course Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Social Aspects of Health Across the Life-Course Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Immunomodulation and Vaccines Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Immunomodulation and Vaccines Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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Uganda Virus Research Institute
Affiliation as printed
Uganda Virus Research Institute, Entebbe, Uganda
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Leiden University Medical Center · MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Department of Parasitology, Leiden University Medical Center, Leiden, The Netherlands
Social Aspects of Health Across the Life-Course Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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London School of Hygiene & Tropical Medicine · MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, UK
Social Aspects of Health Across the Life-Course Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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London School of Hygiene & Tropical Medicine · MRC/UVRI & LSHTM Uganda Research Unit · Uganda Virus Research Institute
Affiliation as printed
Department of Clinical Research, London School of Hygiene and Tropical Medicine, London, UK
Immunomodulation and Vaccines Programme, MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
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