Julius Global Health, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
Trop Med Int Health. 2019 Mar;24(3):264-279. doi: 10.1111/tmi.13195. Epub 2019 Jan 8.
To systematically review reasons for the willingness to participate in biomedical human subjects research in low- and middle-income countries (LMICs).
Five databases were systematically searched for articles published between 2000 and 2017 containing the domain of 'human subjects research' in 'LMICs' and determinant 'reasons for (non)participation'. Reasons mentioned were extracted, ranked and results narratively described.
Ninety-four articles were included, 44 qualitative and 50 mixed-methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non-participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non-patient or patient participants and real or hypothetical study designs.
Addressing factors that affect (non-)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.
系统回顾在中低收入国家(LMICs)参与生物医学人体研究的意愿的原因。
系统检索了五个数据库,以获取 2000 年至 2017 年间发表的包含“LMICs 中的人体研究”和“参与(不参与)的决定因素”领域的文章。提取并排名了提到的原因,并进行了叙述性描述。
共纳入 94 篇文章,其中 44 篇为定性研究,50 篇为混合方法研究。参与的主要原因是利他主义、个人健康获益、获得医疗保健、经济利益、知识、社会支持和信任。不参与的主要原因是安全问题、不便、污名化、缺乏社会支持、保密性问题、身体疼痛、疗效问题和不信任。在 HIV 研究中,污名化是一个主要问题。这些原因在不同地区、性别、非患者或患者参与者以及真实或假设的研究设计中都相似。
在规划过程中和研究实施过程中解决影响(不)参与的因素,可以增强自愿参与的意愿,并减少潜在参与者的障碍。