Molyneux Sassy, Sariola Salla, Allman Dan, Dijkstra Maartje, Gichuru Evans, Graham Susan, Kamuya Dorcas, Gakii Gloria, Kayemba Brian, Kombo Bernadette, Maleche Allan, Mbwambo Jessie, Marsh Vicki, Micheni Murugi, Mumba Noni, Parker Michael, Shio Jasmine, Yah Clarence, van der Elst Elise, Sanders Eduard
Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.
The Ethox Centre, Department of Public Health, University of Oxford, Oxford, UK.
Health Res Policy Syst. 2016 May 27;14(1):40. doi: 10.1186/s12961-016-0106-3.
Community engagement, incorporating elements of the broader concepts of public and stakeholder engagement, is increasingly promoted globally, including for health research conducted in developing countries. In sub-Saharan Africa, community engagement needs and challenges are arguably intensified for studies involving gay, bisexual and other men who have sex with men, where male same-sex sexual interactions are often highly stigmatised and even illegal. This paper contextualises, describes and interprets the discussions and outcomes of an international meeting held at the Kenya Medical Research Institute-Wellcome Trust in Kilifi, Kenya, in November 2013, to critically examine the experiences with community engagement for studies involving men who have sex with men.
We discuss the ethically charged nature of the language used for men who have sex with men, and of working with 'representatives' of these communities, as well as the complementarity and tensions between a broadly public health approach to community engagement, and a more rights based approach. We highlight the importance of researchers carefully considering which communities to engage with, and the goals, activities, and indicators of success and potential challenges for each. We suggest that, given the unintended harms that can emerge from community engagement (including through labelling, breaches in confidentiality, increased visibility and stigma, and threats to safety), representatives of same-sex populations should be consulted from the earliest possible stage, and that engagement activities should be continuously revised in response to unfolding realities. Engagement should also include less vocal and visible men who have sex with men, and members of other communities with influence on the research, and on research participants and their families and friends. Broader ethics support, advice and research into studies involving men who have sex with men is needed to ensure that ethical challenges - including but not limited to those related to community engagement - are identified and addressed. Underlying challenges and dilemmas linked to stigma and discrimination of men who have sex with men in Africa raise special responsibilities for researchers. Community engagement is an important way of identifying responses to these challenges and responsibilities but itself presents important ethical challenges.
社区参与融合了公众参与和利益相关者参与等更广泛概念的要素,在全球范围内得到越来越多的推广,包括在发展中国家开展的健康研究。在撒哈拉以南非洲地区,对于涉及男同性恋者、双性恋者和其他与男性发生性关系的男性的研究而言,社区参与的需求和挑战可能会加剧,因为男性同性性行为往往受到高度污名化甚至是非法的。本文将2013年11月在肯尼亚基利菲的肯尼亚医学研究所 - 威康信托基金会举行的一次国际会议的讨论内容和成果进行背景介绍、描述和解读,以批判性地审视涉及与男性发生性关系的男性的研究中的社区参与经验。
我们讨论了用于描述与男性发生性关系的男性的语言所具有的伦理敏感性,以及与这些社区的“代表”合作的情况,还讨论了社区参与的广义公共卫生方法与更基于权利的方法之间的互补性和紧张关系。我们强调研究人员仔细考虑与哪些社区进行接触的重要性,以及每个社区的目标、活动、成功指标和潜在挑战。我们建议,鉴于社区参与可能产生的意外危害(包括通过贴标签、违反保密规定、增加曝光度和污名化以及安全威胁),应尽早咨询同性人群的代表,并且应根据不断变化的实际情况持续修订参与活动。参与还应包括那些不太出声和不太显眼的与男性发生性关系的男性,以及对研究、研究参与者及其家人和朋友有影响的其他社区成员。需要对涉及与男性发生性关系的男性的研究提供更广泛的伦理支持、建议和研究,以确保识别并应对伦理挑战——包括但不限于与社区参与相关的挑战。与非洲对与男性发生性关系的男性的污名化和歧视相关的潜在挑战和困境给研究人员带来了特殊责任。社区参与是确定应对这些挑战和责任的方式的重要途径,但本身也带来了重要的伦理挑战。