Towards a framework for community...
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Author's personal copy Towards a framework for community engagement in global health research James V. Lavery1,2,3, Paulina O. Tinadana3, Thomas W. Scott4, Laura C. Harrington5, Janine M. Ramsey6, Claudia Ytuarte-Nunez4 �� and Anthony A. James7 1 Centre for Research on Inner City Health & Centre for Global Health Research, Keenan Research Centre in the Li Ka Shing Knowledge Institute of St. Michael���s Hospital, Toronto, Canada 2 Dalla Lana School of Public Health and Joint Centre for Bioethics, University of Toronto, Toronto, M5B 1W8, Canada 3 Program on Ethics and Commercialization, McLaughlin-Rotman Centre for Global Health Research, University Health Network and University of Toronto, Toronto, M5G 1L7, Canada 4 Department of Entomology, University of California, Davis, California, USA 5 Department of Entomology, Cornell University, Ithaca, NY 14853, USA 6 National Institute of Public Health, Tapachula, Chiapas 30700, Mexico 7 Departments of Microbiology & Molecular Genetics and Molecular Biology & Biochemistry, University of California, Irvine, CA 92697, USA New technologies for global public health are spurring critical evaluations of the role of communities in research and what they receive in exchange for their participation. Community engagement activities result- ing from these evaluations are most challenging for novel scientific ventures, particularly those involving controversial strategies and those in which some risks are poorly understood or determined. Remarkably, there is no explicit body of community engagement knowl- edge to which researchers can turn for guidance about approaches that are most likely to be effective in differ- ent contexts, and why. We describe here a framework that provides a starting point for broader discussions of community engagement in global health research, particularly as it relates to the development, evaluation and application of new technologies. Community engagement in research There has been an evolution in thinking during the past decade about the role of communities in research projects, and the protections and benefits owed to them in exchange for their participation [1]. Insights into how communities can be harmed or exploited, intentionally or otherwise, and a growing recognition of the political, economic and cul- tural assumptions that shape the global discourse and practice of ���development��� [1���4] have fostered greater atten- tion to the process and substance of community engage- ment (CE) in research [5���7], particularly in developing countries and aboriginal communities [8���12]. CE is a central theme in the women���s health movement, environmental health activism and more broadly in mobi- lizing communities for political action [13���15], but its impact to date on biomedical research has been modest. Although there is increasing awareness and attention to practices, and reporting and critical evaluation are becom- ing more common [5���7,10], there is a dearth of literature to guide researchers in the effective application of CE activi- ties. Thus, CE practices remain as much art as science and what makes them effective is still determined largely by a combination of intuition, experience and opinion. Yet, while the science and practice of CE matures [5���7,16], investigators must engage communities in their research because failure to do so might have both ethical and scientific costs. We describe here a framework based on principles and ���points to consider��� that was developed to guide CE in a collaborative study in Mexico involving genetically engin- eered mosquitoes to prevent dengue virus transmission [17]. Funded under the Grand Challenges in Global Health (GCGH) initiative [18], this project studies genetic strat- egies to prevent infection by reducing the density of the principle mosquito vector Aedes aegypti and/or limiting the ability of the insect to transmit viruses. The CE framework was developed collaboratively with the Advisory Service of the Ethical, Social and Cultural (ESC) Program for the GCGH [19]. Although this framework evolved from a specific research project, our larger objective was to provide a starting point for a broader discussion of the purpose and effectiveness of CE in global public health research, particularly as it relates to the testing and introduction of new health technologies. Our intent was to achieve the highest-quality and most-respectful CE with the collabor- ating communities, and thereby contribute more generally to the developing dialogue about such activities in research. By making our assumptions explicit, publicly available and open to scrutiny, we invite attention and response that might strengthen both our approach and conceptual basis of CE in biomedical research in general. Effective community engagement: a framework The 12 ���points to consider��� (Box 1) evolved from published reports with an emphasis on those that avoid exploitation in research [3,5,11,20]. Important concepts came from community development, sociology, anthropology, agricul- ture, environmental health, public health, political science, civil society and non-academic literature. An on-going challenge is to ensure that relevant insights and experi- Opinion Corresponding author: James, A.A. (aajames@uci.edu). 1471-4922/$ ��� see front matter �� 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.pt.2010.02.009 Trends in Parasitology 26 (2010) 279���283 279