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      Evaluating community engagement in global health research: the need for metrics

      , , , , , the Ethics Working Group of the HIV Prevention Trials Network
      BMC Medical Ethics
      BioMed Central
      Research ethics, Community engagement, Participatory research, Global health, Evaluation, Metrics

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          Community engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate.


          We describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research.


          There is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings.

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          Most cited references41

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          What makes clinical research in developing countries ethical? The benchmarks of ethical research.

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            What makes clinical research ethical?

            Many believe that informed consent makes clinical research ethical. However, informed consent is neither necessary nor sufficient for ethical clinical research. Drawing on the basic philosophies underlying major codes, declarations, and other documents relevant to research with human subjects, we propose 7 requirements that systematically elucidate a coherent framework for evaluating the ethics of clinical research studies: (1) value-enhancements of health or knowledge must be derived from the research; (2) scientific validity-the research must be methodologically rigorous; (3) fair subject selection-scientific objectives, not vulnerability or privilege, and the potential for and distribution of risks and benefits, should determine communities selected as study sites and the inclusion criteria for individual subjects; (4) favorable risk-benefit ratio-within the context of standard clinical practice and the research protocol, risks must be minimized, potential benefits enhanced, and the potential benefits to individuals and knowledge gained for society must outweigh the risks; (5) independent review-unaffiliated individuals must review the research and approve, amend, or terminate it; (6) informed consent-individuals should be informed about the research and provide their voluntary consent; and (7) respect for enrolled subjects-subjects should have their privacy protected, the opportunity to withdraw, and their well-being monitored. Fulfilling all 7 requirements is necessary and sufficient to make clinical research ethical. These requirements are universal, although they must be adapted to the health, economic, cultural, and technological conditions in which clinical research is conducted. JAMA. 2000;283:2701-2711.
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              Grand Challenges in Global Health: Community Engagement in Research in Developing Countries

              The authors argue that there have been few systematic attempts to determine the effectiveness of community engagement in research.

                Author and article information

                +1 919.544.7040 ext 11587 , kmacqueen@fhi360.org
                BMC Med Ethics
                BMC Med Ethics
                BMC Medical Ethics
                BioMed Central (London )
                1 July 2015
                1 July 2015
                : 16
                : 44
                [ ]Social and Behavioral Health Sciences, FHI 360, 359 Blackwell Street, Durham, NC 27514 USA
                [ ]Bioethics and Global Health, Bhopal/Pune, India
                [ ]Vulindlela Clinical Research Site, CAPRISA, University of KwaZulu-Natal, Durban, South Africa
                [ ]Hofstra University, Hempstead, NY USA
                [ ]Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD USA
                © MacQueen et al. 2015

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                : 12 January 2015
                : 26 May 2015
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                © The Author(s) 2015

                research ethics,community engagement,participatory research,global health,evaluation,metrics
                research ethics, community engagement, participatory research, global health, evaluation, metrics


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