KEMRI/Wellcome Trust Research Programme, Kilifi, Kenya.
Dev World Bioeth. 2013 Apr;13(1):38-47. doi: 10.1111/dewb.12015.
Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information sharing and identifying potential participants; thereby taking on roles that overlapped with those of employed fieldworkers (FWs). While CHWs involvement was generally perceived as positive and appreciated, there were challenges in their relations with FWs and other community members, partly related to levels and forms of remuneration. Specifically, payment of CHWs was not as high as for FWs and was based on 'performance'. This extrinsic motivation had the potential to crowd out CHWs intrinsic motivation to perform their pre-existing community roles. CHWs remuneration potentially also contributed to CHWs distorting trial information to encourage community members to participate; and to researchers encouraging CHWs to utilize their social connections and status to increase the numbers of people who attended information giving sessions. Individual consent processes were protected in this trial through final information sharing and consent being conducted by trained clinical staff who were not embedded in study communities. However, our experiences suggest that roles and remuneration of all front line staff and volunteers involved in trials need careful consideration from the outset, and monitoring and discussion over time.
社区参与在生物医学研究中越来越受到重视,既是一种权利,也是加强伦理实践的一种方式。我们借鉴访谈和观察结果,考虑了将社区卫生工作者(CHWs)纳入肯尼亚海岸疫苗试验社区参与策略的实际和伦理影响。CHWs 最初是作为一个重要的网络被纳入,以了解试验情况。然而,随着时间的推移,根据社区的建议,他们开始参与试验信息共享和潜在参与者的识别;从而承担了与雇佣实地工作者(FWs)重叠的角色。虽然 CHWs 的参与通常被认为是积极的和值得赞赏的,但他们与 FW 及其他社区成员之间存在一些挑战,部分原因是薪酬水平和形式不同。具体来说,CHWs 的薪酬不如 FWs 高,而且是基于“绩效”。这种外在动机有可能削弱 CHWs 履行其现有社区角色的内在动机。CHWs 的薪酬也可能导致 CHWs 歪曲试验信息,以鼓励社区成员参与;并促使研究人员鼓励 CHWs 利用他们的社会关系和地位来增加参加信息发布会的人数。在这项试验中,通过培训有素的临床工作人员进行最终的信息共享和同意,保护了个人同意过程,这些工作人员没有嵌入研究社区。然而,我们的经验表明,参与试验的所有一线工作人员和志愿者的角色和薪酬需要从一开始就仔细考虑,并随着时间的推移进行监测和讨论。