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  1. 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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  • 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):76.
    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 study (...)
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  • Working with C Ommunity H Ealth W Orkers as ‘ V Olunteers’ in a Vaccine Trial: Practical and Ethical Experiences and Implications.Vibian Angwenyi, Dorcas Kamuya, Dorothy Mwachiro, Vicki Marsh, Patricia Njuguna & Sassy Molyneux - 2013 - Developing World Bioethics 13 (1):38-47.
    Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information (...)
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  • Preventing Ethics Dumping: The Challenges for Kenyan Research Ethics Committees.Kate Chatfield, Doris Schroeder, Anastasia Guantai, Kirana Bhatt, Elizabeth Bukusi, Joyce Adhiambo Odhiambo, Julie Cook & Joshua Kimani - 2020 - Research Ethics 17 (1):23-44.
    Ethics dumping is the practice of undertaking research in a low- or middle-income setting which would not be permitted, or would be severely restricted, in a high-income setting. Whilst Kenya operates a sophisticated research governance system, resource constraints and the relatively low number of accredited research ethics committees limit the capacity for ensuring ethical compliance. As a result, Kenya has been experiencing cases of ethics dumping. This article presents 11 challenges in the context of preventing ethics dumping in Kenya, namely (...)
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  • 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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  • Considering the Importance of Context for Ethical Practice on Reimbursement, Compensation and Incentives for Volunteers in Human Infection Controlled Studies.Primus Che Chi, Esther Owino, Irene Jao, Vicki Marsh & Dorcas Kamuya - 2021 - American Journal of Bioethics 21 (3):40-42.
    The proposed framework by Lynch et al. for promoting ethical forms of payment in Human Infection Controlled Studies in general and SARS-Cov-2 HICS in particular is an important contri...
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  • Community Engagement and Ethical Global Health Research.Bipin Adhikari, Christopher Pell & Phaik Yeong Cheah - 2020 - Global Bioethics 31 (1):1-12.
    Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how community engagement can contribute to ethical (...)
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  • “Losing the Tombola”: A Case Study Describing the Use of Community Consultation in Designing the Study Protocol for a Randomised Controlled Trial of a Mental Health Intervention in Two Conflict-Affected Regions.Leslie Shanks, Claudio Moroni, Isabel Cristina Rivera, Debbie Price, Sifa Banzira Clementine & Giovanni Pintaldi - 2015 - BMC Medical Ethics 16 (1):38.
    Community consultation is increasingly recommended, and in some cases, required by ethical review boards for research that involves higher levels of ethical risk such as international research and research with vulnerable populations. In designing a randomised control trial of a mental health intervention using a wait list control, we consulted the community where the research would be undertaken prior to finalising the study protocol. The study sites were two conflict-affected locations: Grozny in the Chechen Republic and Kitchanga in eastern Democratic (...)
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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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  • Motivations and Perceptions of Community Advisory Boards in the Ethics of Medical Research: The Case of the Thai-Myanmar Border.Khin Maung Lwin, Phaik Y. Cheah, Phaik K. Cheah, Nicholas J. White, Nicholas P. J. Day, Francois Nosten & Michael Parker - 2014 - BMC Medical Ethics 15 (1):12.
    Community engagement is increasingly promoted as a marker of good, ethical practice in the context of international collaborative research in low-income countries. There is, however, no widely agreed definition of community engagement or of approaches adopted. Justifications given for its use also vary. Community engagement is, for example, variously seen to be of value in: the development of more effective and appropriate consent processes; improved understanding of the aims and forms of research; higher recruitment rates; the identification of important ethical (...)
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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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  • Community Engagement Strategies for Genomic Studies in Africa: A Review of the Literature. [REVIEW]Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu & Michael Parker - 2015 - BMC Medical Ethics 16 (1):24.
    Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.
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  • Engaging with Community Advisory Boards in Lusaka Zambia: Perspectives From the Research Team and CAB Members.Alwyn Mwinga & Keymanthri Moodley - 2015 - BMC Medical Ethics 16 (1):1-11.
    BackgroundThe use of a Community Advisory Board is one method of ensuring community engagement in community based research. To identify the process used to constitute CABs in Zambia, this paper draws on the perspectives of both research team members and CAB members from research groups who used CABs in Lusaka. Enabling and restricting factors impacting on the functioning of the CAB were identified.MethodsAll studies approved by the University of Zambia Bioethics Research Committee from 2008 – 2012 were reviewed to identify (...)
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  • Exploring Researchers’ Experiences of Working with a Researcher-Driven, Population-Specific Community Advisory Board in a South African Schizophrenia Genomics Study.Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar & Dan J. Stein - 2015 - BMC Medical Ethics 16 (1):1-9.
    BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...)
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  • Consulting Communities on Feedback of Genetic Findings in International Health Research: Sharing Sickle Cell Disease and Carrier Information in Coastal Kenya. [REVIEW]Vicki Marsh, Francis Kombe, Raymond Fitzpatrick, Thomas N. Williams, Michael Parker & Sassy Molyneux - 2013 - BMC Medical Ethics 14 (1):41.
    International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...)
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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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  • Who Should Decide About Children’s and Adolescents’ Participation in Health Research? The Views of Children and Adults in Rural Kenya.Vicki Marsh, Nancy Mwangome, Irene Jao, Katharine Wright, Sassy Molyneux & Alun Davies - 2019 - BMC Medical Ethics 20 (1):41.
    International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take (...)
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  • An Ethically Accepted Concept but Not Well Known: Research Ethics Committees in Nigeria on the Concept of Benefit Sharing.Bege D. Kris D. - 2015 - Journal of Clinical Research and Bioethics 6 (3).
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  • Ethical Issues in the Export, Storage and Reuse of Human Biological Samples in Biomedical Research: Perspectives of Key Stakeholders in Ghana and Kenya.Paulina Tindana, Catherine S. Molyneux, Susan Bull & Michael Parker - 2014 - BMC Medical Ethics 15 (1):76.
    For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics (...)
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