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  1. Structural Coercion in the Context of Community Engagement in Global Health Research Conducted in a Low Resource Setting in Africa.Deborah Nyirenda, Salla Sariola, Patricia Kingori, Bertie Squire, Chiwoza Bandawe, Michael Parker & Nicola Desmond - 2020 - BMC Medical Ethics 21 (1):1-10.
    Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data (...)
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  • Lay Persons’ Perception of the Requirements for Research in Emergency Obstetric and Newborn Care.Dan Kabonge Kaye - 2021 - BMC Medical Ethics 22 (1):1-13.
    Background Factors that could potentially act as facilitators and barriers to successful recruitment strategies in perinatal clinical trials are not well documented. The objective was to assess lay persons’ understanding of the informed consent for randomized clinical trial in emergency obstetric and newborn care. Methods This was a qualitative study conducted among survivors of severe obstetric complications who were attending the post-natal clinic of Kawempe National Referral Hospital, Uganda, 6–8 weeks after surviving severe obstetric complications during pregnancy or childbirth. The (...)
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  • Community Involvement in Biomedical Research Conducted in the Global Health Context; What Can Be Done to Make It Really Matter?Federica Fregonese - 2018 - BMC Medical Ethics 19 (S1).
    Background Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. Rules on involving the population affected when conducting research have been established in (...)
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  • Increased Research Literacy to Facilitate Community Ownership of Health Research in Low and Middle Income Countries.Ruth G. St Fleur & Seth J. Schwartz - 2020 - Ethics and Behavior 30 (6):414-424.
    ABSTRACT The expansion of health research to low and middle income countries has increased the likelihood of exploitation and undue influence in economically vulnerable populations. In behavioral research, “reasonable availability”, which was originally developed for biomedical research and advocates for the equitable provision of any product developed during the research process, cannot always prevent exploitation. In such cases and settings, the informed consent process may lack cross-cultural validity and therapeutic misconceptions may arise. This article advocates for a mutual learning framework (...)
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  • Data Access Committees.Jan Piasecki & Phaik Yeong Cheah - 2020 - BMC Medical Ethics 21 (1):1-8.
    BackgroundSharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee, rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, (...)
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  • Forming and Implementing Community Advisory Boards in Low- and Middle-Income Countries: A Scoping Review.Yang Zhao, Thomas Fitzpatrick, Bin Wan, Suzanne Day, Allison Mathews & Joseph D. Tucker - 2019 - BMC Medical Ethics 20 (1):1-11.
    Background Community advisory boards have expanded beyond high-income countries and play an increasing role in low- and middle-income country research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases for publications describing or evaluating CABs in LMICs. Two researchers independently reviewed (...)
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  • Solidarity and Community Engagement in Global Health Research.Bridget Pratt, Phaik Yeong Cheah & Vicki Marsh - 2020 - American Journal of Bioethics 20 (5):43-56.
    Community engagement is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global heal...
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  • Experiences of Community Members and Researchers on Community Engagement in an Ecohealth Project in South Africa and Zimbabwe.Rosemary Musesengwa & Moses J. Chimbari - 2017 - BMC Medical Ethics 18 (1):1-15.
    Background Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy collaboratively developed by researchers and (...)
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  • Challenges Arising When Seeking Broad Consent for Health Research Data Sharing: A Qualitative Study of Perspectives in Thailand.Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker & Susan Bull - 2018 - BMC Medical Ethics 19 (1):86.
    Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent (...)
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  • “Not Just Dogs, but Rabid Dogs”: Tensions and Conflicts Amongst Research Volunteers in Malawi.Mackwellings Phiri, Kate Gooding, Deborah Nyirenda, Rodrick Sambakunsi, Moses Kelly Kumwenda & Nicola Desmond - 2018 - Global Bioethics 29 (1):65-80.
    ABSTRACTBuilding trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting (...)
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