TY - JOUR
T1 - “We are the heroes because we are ready to die for this country”
T2 - Participants’ Decision-making and Grounded Ethics in an Ebola vaccine clinical trial.
AU - Tengbeh, Angus F.
AU - Enria, Luisa
AU - Smout, Elizabeth
AU - Mooney, Thomas
AU - Callaghan, Mike
AU - Ishola, David
AU - Leigh, Bailah
AU - Watson-Jones, Deborah
AU - Greenwood, Brian
AU - Larson, Heidi
AU - Lees, Shelley
PY - 2018/4/30
Y1 - 2018/4/30
N2 - 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.
AB - 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.
KW - Clinical trials
KW - Ebola
KW - Research ethics
KW - Sierra Leone
KW - Vaccine
UR - http://www.scopus.com/inward/record.url?scp=85043468837&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2018.03.008
DO - 10.1016/j.socscimed.2018.03.008
M3 - Article
SN - 0277-9536
VL - 203
SP - 35
EP - 42
JO - Social Science & Medicine
JF - Social Science & Medicine
ER -