title: Public/community engagement in health research with men who have sex with men in sub-Saharan Africa: challenges and opportunities.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya. SMolyneux@kemri-wellcome.org.|The Ethox Centre, Department of Public Health, University of Oxford, Oxford, UK. SMolyneux@kemri-wellcome.org.|The Centre for Clinical Vaccinology and Tropical Medicine, Nuffield Department of Medicine, University of Oxford, Oxford, UK. SMolyneux@kemri-wellcome.org.
authors.forename: Sassy
authors.initials: S
authors.lastname: Molyneux
authors.affiliation: The Ethox Centre, Department of Public Health, University of Oxford, Oxford, UK.|Faculty of Social Sciences, University of Torku, Torku, Finland.
authors.forename: Salla
authors.initials: S
authors.lastname: Sariola
authors.affiliation: Dalla Lana School of Public Health, University of Toronto, Toronto, Canada.
authors.forename: Dan
authors.initials: D
authors.lastname: Allman
authors.affiliation: Department of Global Health, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Maartje
authors.initials: M
authors.lastname: Dijkstra
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.
authors.forename: Evans
authors.initials: E
authors.lastname: Gichuru
authors.affiliation: Kenya Research Group, University of Washington, Seattle, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Graham
authors.affiliation: 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.
authors.forename: Dorcas
authors.initials: D
authors.lastname: Kamuya
authors.affiliation: University of Nairobi, Nairobi, Kenya.|University of Manitoba, Manitoba, USA.
authors.forename: Gloria
authors.initials: G
authors.lastname: Gakii
authors.affiliation: University of Cape Town, Cape Town, South Africa.
authors.forename: Brian
authors.initials: B
authors.lastname: Kayemba
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.
authors.forename: Bernadette
authors.initials: B
authors.lastname: Kombo
authors.affiliation: KELIN - Reclaiming rights, Rebuilding Live, Nairobi, Kenya.
authors.forename: Allan
authors.initials: A
authors.lastname: Maleche
authors.affiliation: Department of Psychiatry and Mental Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
authors.forename: Jessie
authors.initials: J
authors.lastname: Mbwambo
authors.affiliation: 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.|The Centre for Clinical Vaccinology and Tropical Medicine, Nuffield Department of Medicine, University of Oxford, Oxford, UK.
authors.forename: Vicki
authors.initials: V
authors.lastname: Marsh
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.
authors.forename: Murugi
authors.initials: M
authors.lastname: Micheni
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.
authors.forename: Noni
authors.initials: N
authors.lastname: Mumba
authors.affiliation: The Ethox Centre, Department of Public Health, University of Oxford, Oxford, UK.
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
authors.affiliation: Department of Project Management, Deloitte Consulting Ltd, Dar es Salaam, Tanzania.
authors.forename: Jasmine
authors.initials: J
authors.lastname: Shio
authors.affiliation: Wits Reproductive Health & HIV Institute, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
authors.forename: Clarence
authors.initials: C
authors.lastname: Yah
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.|Department of Global Health, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Elise
authors.initials: E
authors.lastname: van der Elst
authors.affiliation: Department of Health Systems and Research Ethics, KEMRI/Wellcome Trust Research Programme (KWTRP), Kilifi, Kenya.|Department of Global Health, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: Eduard
authors.initials: E
authors.lastname: Sanders
mesh_terms: D017954:Africa South of the Sahara; D003256:Community Participation; D003695:Delivery of Health Care; D003906:Developing Countries; D032984:Ethics, Research; D006296:Health Services; D006302:Health Services Research / Q000941:ethics*; D063509:Homophobia; D018451:Homosexuality, Male; D006806:Human Rights; D006801:Humans; D008297:Male; D011634:Public Health; D012107:Research Design; D012108:Research Personnel; D063508:Social Discrimination; D012941:Social Responsibility; D057545:Social Stigma