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“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial

Author

Listed:
  • Tengbeh, Angus Fayia
  • Enria, Luisa
  • Smout, Elizabeth
  • Mooney, Thomas
  • Callaghan, Mike
  • Ishola, David
  • Leigh, Bailah
  • Watson-Jones, Deborah
  • Greenwood, Brian
  • Larson, Heidi
  • Lees, Shelley

Abstract

The 2014–2016 Ebola epidemic presented a challenging setting in which to carry out clinical trials. This paper reports findings from social science research carried out in Kambia, Northern Sierra Leone during first year of an Ebola vaccine trial (August 2015–July 2016). The social science team collected data through ethnographic observation, 42 in depth interviews; 4 life narratives; 200 exit interviews; 31 key informant interviews; and 8 focus group discussions with trial participants and community members not enrolled in the trial. Whilst research often focuses on why people refuse vaccination, we instead explore participant motivations for volunteering for the study, in spite of prevailing anxieties, rumours and mistrust during and after the Ebola outbreak. In so doing the paper contributes to on-going debates about research ethics and community engagement in resource poor contexts, offering reflections from an emergency and post-epidemic setting. We analyse participants' perceptions of the risks and benefits of participations, highlighting the importance of a contextual approach. We focus on four types of motivation: altruism; curiosity and hope; health-seeking; and notions of exchange, and argue for the role of social science in developing grounded research ethics and community engagement strategies that can take into account context and local realities.

Suggested Citation

  • Tengbeh, Angus Fayia & Enria, Luisa & Smout, Elizabeth & Mooney, Thomas & Callaghan, Mike & Ishola, David & Leigh, Bailah & Watson-Jones, Deborah & Greenwood, Brian & Larson, Heidi & Lees, Shelley, 2018. "“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial," Social Science & Medicine, Elsevier, vol. 203(C), pages 35-42.
    • Handle: RePEc:eee:socmed:v:203:y:2018:i:c:p:35-42
    DOI: 10.1016/j.socscimed.2018.03.008
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    References listed on IDEAS

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    1. Charles Gore & Melissa Leach, 2015. "The Ebola Crisis and Post‐2015 Development," Journal of International Development, John Wiley & Sons, Ltd., vol. 27(6), pages 816-834, August.
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    3. Leach, A. & Hilton, S. & Greenwood, B. M. & Manneh, E. & Dibba, B. & Wilkins, A. & Mulholland, E. K., 1999. "An evaluation of the informed consent procedure used during a trial of a Haemophilus influenzae type B conjugate vaccine undertaken in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 48(2), pages 139-148, January.
    4. Molyneux, Sassy & Geissler, P. Wenzel, 2008. "Ethics and the ethnography of medical research in Africa," Social Science & Medicine, Elsevier, vol. 67(5), pages 685-695, September.
    5. Fairhead, James & Leach, Melissa & Small, Mary, 2006. "Where techno-science meets poverty: Medical research and the economy of blood in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 63(4), pages 1109-1120, August.
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    Cited by:

    1. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).
    2. Leach, Melissa & MacGregor, Hayley & Akello, Grace & Babawo, Lawrence & Baluku, Moses & Desclaux, Alice & Grant, Catherine & Kamara, Foday & Nyakoi, Marion & Parker, Melissa & Richards, Paul & Mokuwa,, 2022. "Vaccine anxieties, vaccine preparedness: Perspectives from Africa in a Covid-19 era," Social Science & Medicine, Elsevier, vol. 298(C).
    3. Lanau, Alba & Grieve, Tigist & Tengbeh, Angus Fayia & Enria, Luisa & Wayack-Pambé, Madeleine, 2023. "“Since the market is closed, there is no more money, there is nothing we can do”: Voices of adolescent girls in Burkina Faso and Sierra Leone on poverty and COVID-19," Children and Youth Services Review, Elsevier, vol. 155(C).

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