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

Bibliographic Data

ID4588890
AuthorsAngus Fayia Tengbeh (University of Sierra Leone), L Enria (0000-0002-6336-6531, University of Bath, corresponding author), Elizabeth Smout (London School of Hygiene & Tropical Medicine), Thomas A Mooney (London School of Hygiene & Tropical Medicine), Thomas Mooney, Mike Callaghan (0000-0002-5199-9489, London School of Hygiene & Tropical Medicine), David Ishola (London School of Hygiene & Tropical Medicine), Bailah Leigh (0000-0002-2936-0857, University of Sierra Leone), Deborah Watson-Jones (0000-0001-6247-1746, London School of Hygiene & Tropical Medicine), Brad Greenwood (0000-0001-5725-9118, London School of Hygiene & Tropical Medicine), Brian Greenwood, Heidi Larson, Heidi J Larson (0000-0002-8477-7583, London School of Hygiene & Tropical Medicine), Shelley Susan Lee (0000-0003-0062-7930, London School of Hygiene & Tropical Medicine)
Year2018
Volume203
Pages35-42
Publication date2018-04-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSocial Science & Medicine (JOURNAL)
Journal identifiersISSN: 0277-9536 • E-ISSN: 1873-5347
PublisherElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2018.03.008
PMID29544144
OpenAlexW2793947349
LanguageEN
Citations received25
References cited35

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

Clinical decision making · Clinical trial · Ebola vaccine · Ebola virus · Family medicine · Grounded theory · Medical decision making · Medical ethics · Outbreak · Qualitative research · Social science · Sociology · Global Security and Public Health · Medicine · Vaccine Coverage and Hesitancy · Viral Infections and Outbreaks Research · Gerontology · Internal Medicine · Virology