"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
"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
复制标题
DOI：
10.1016/j.socscimed.2018.03.008
复制
发表时间：
2018-04-01
影响因子：
5.4
通讯作者：
Lees, Shelley
中科院分区：
文献类型：
--
作者：
Tengbeh, Angus Fayia;Enria, Luisa;Lees, Shelley
2014-2016年埃博拉疫情为开展临床试验带来了挑战。本文报告了在塞拉利昂北方坎比亚进行的埃博拉疫苗试验第一年（2015年8月至2016年7月）的社会科学研究结果。社会科学团队通过人种学观察、42次深度访谈、4次生活叙述、200次退出访谈、31次关键线人访谈以及8次与试验参与者和未参加试验的社区成员的焦点小组讨论收集数据。虽然研究通常集中在人们拒绝接种疫苗的原因上，但我们反而探讨了参与者自愿参加这项研究的动机，尽管在埃博拉疫情期间和之后普遍存在焦虑，谣言和不信任。在这样做的文件有助于正在进行的辩论研究伦理和社区参与资源匮乏的情况下，提供从紧急情况和后疫情的设置反思。我们分析了参与者对参与的风险和益处的看法，强调了情境方法的重要性。我们专注于四种类型的动机：利他主义;好奇心和希望;寻求健康;和交换的概念，并主张社会科学在发展接地的研究伦理和社区参与战略，可以考虑到上下文和当地的现实中的作用。
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.