"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.


Tengbeh, AF; Enria, L; Smout, E; Mooney, T; Callaghan, M; Ishola, D; Leigh, B; Watson-Jones, D; Greenwood, B; Larson, H; Lees, S; (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 (1982), 203. pp. 35-42. ISSN 0277-9536 DOI: https://doi.org/10.1016/j.socscimed.2018.03.008

[img]
Preview
Text - Published Version
License:

Download (225kB) | Preview

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.

Item Type: Article
Faculty and Department: Faculty of Infectious and Tropical Diseases > Dept of Clinical Research
Faculty of Infectious and Tropical Diseases > Dept of Disease Control
Faculty of Public Health and Policy > Dept of Global Health and Development
Faculty of Epidemiology and Population Health > Dept of Infectious Disease Epidemiology
PubMed ID: 29544144
Web of Science ID: 430785900005
URI: http://researchonline.lshtm.ac.uk/id/eprint/4647001

Statistics


Download activity - last 12 months
Downloads since deposit
18Downloads
60Hits
Accesses by country - last 12 months
Accesses by referrer - last 12 months
Impact and interest
Additional statistics for this record are available via IRStats2

Actions (login required)

Edit Item Edit Item