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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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  • Recognising Values and Engaging Communities Across Cultures: Towards Developing a Cultural Protocol for Researchers.Rakhshi Memon, Muqaddas Asif, Ameer B. Khoso, Sehrish Tofique, Tayyaba Kiran, Nasim Chaudhry, Nusrat Husain & Sarah J. L. Edwards - 2021 - BMC Medical Ethics 22 (1):1-8.
    Efforts to build research capacity and capability in low and middle income countries has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/aids, even culturally specific codes for recruiting vulnerable populations such as the San or (...)
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  • Social Justice and the Ethical Goals of Community Engagement in Global Health Research.Bridget Pratt - 2019 - Journal of Bioethical Inquiry 16 (4):571-586.
    Social justice has been identified as a foundational moral commitment for global health research ethics. Yet what a commitment to social justice means for community engagement in such research has not been critically examined. This paper draws on the rich social justice literature from political philosophy to explore the normative question: What should the ethical goals of community engagement be if it is to help connect global health research to social justice? Five ethical goals for community engagement are proposed that (...)
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  • Social Justice and the Ethical Goals of Community Engagement in Global Health Research.Bridget Pratt - 2019 - Journal of Bioethical Inquiry 16 (4):571-586.
    Social justice has been identified as a foundational moral commitment for global health research ethics. Yet what a commitment to social justice means for community engagement in such research has not been critically examined. This paper draws on the rich social justice literature from political philosophy to explore the normative question: What should the ethical goals of community engagement be if it is to help connect global health research to social justice? Five ethical goals for community engagement are proposed that (...)
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  • The Case for Local Ethics Oversight in International Development Research.Logan Cochrane, Renaud F. Boulanger, Gussai H. Sheikheldin & Gloria Song - unknown
    This paper argues that international development research should be submitted to the oversight of research ethics committees from the countries where data will be collected. This includes research conducted by individuals who may fall outside the jurisdictions of most ethics guidelines or policies, such as individuals contracted by non-governmental organizations. The argument is grounded in an understanding of social justice that recognizes that not seeking local ethics approval can be an affront to the decolonization movement, and may lead to significant (...)
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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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  • Reflections on the Ethics of Participatory Visual Methods to Engage Communities in Global Health Research.Gillian F. Black, Alun Davies, Dalia Iskander & Mary Chambers - 2018 - Global Bioethics 29 (1):22-38.
    ABSTRACTThere is a growing body of literature describing conceptual frameworks for working with participatory visual methods. Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of communicable and non-communicable (...)
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  • Rules of Engagement: Perspectives on Stakeholder Engagement for Genomic Biobanking Research in South Africa.Ciara Staunton, Paulina Tindana, Melany Hendricks & Keymanthri Moodley - 2018 - BMC Medical Ethics 19 (1):1-10.
    Background Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for (...)
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  • Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa.Ciara Staunton, Paulina Tindana, Melany Hendricks & Keymanthri Moodley - 2018 - BMC Medical Ethics 19 (1):13.
    Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective (...)
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  • ‘Wicked Problems’, Community Engagement and the Need for an Implementation Science for Research Ethics.James V. Lavery - 2018 - Journal of Medical Ethics 44 (3):163-164.
    In 1973, Rittel and Webber coined the term ‘wicked problems’, which they viewed as pervasive in the context of social and policy planning.1 Wicked problems have 10 defining characteristics: they are not amenable to definitive formulation; it is not obvious when they have been solved; solutions are not true or false, but good or bad; there is no immediate, or ultimate, test of a solution; every implemented solution is consequential, it leaves traces that cannot be undone; there are no criteria (...)
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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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  • Familiar Ethical Issues Amplified: How Members of Research Ethics Committees Describe Ethical Distinctions Between Disaster and Non-Disaster Research.Catherine M. Tansey, James Anderson, Renaud F. Boulanger, Lisa Eckenwiler, John Pringle, Lisa Schwartz & Matthew Hunt - 2017 - BMC Medical Ethics 18 (1):44.
    The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the (...)
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  • Evaluating Community Engagement in Global Health Research: The Need for Metrics.Jeremy Sugarman, Jessica Holzer, Janet Frohlich, Anant Bhan & Kathleen M. MacQueen - 2015 - BMC Medical Ethics 16 (1):1-9.
    BackgroundCommunity 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.DiscussionWe 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 (...)
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  • Trust and the Ethical Challenges in the Use of Whole Genome Sequencing for Tuberculosis Surveillance: A Qualitative Study of Stakeholder Perspectives.Carly Jackson, Jennifer L. Gardy, Hedieh C. Shadiloo & Diego S. Silva - 2019 - BMC Medical Ethics 20 (1):43.
    Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing is increasingly being used in tuberculosis diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood. Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictions currently using WGS in national TB programs. (...)
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  • Defining and Negotiating the Social Value of Research in Public Health Facilities: Perceptions of Stakeholders in a Research‐Active Province of South Africa.Elizabeth Lutge, Catherine Slack & Douglas Wassenaar - 2017 - Bioethics 31 (2):128-135.
    This article reports on qualitative research conducted in KwaZulu-Natal, South Africa, among researchers and gate-keepers of health facilities in the province. Results suggest disparate but not irreconcilable perceptions of the social value of research in provincial health facilities. This study found that researchers tended to emphasize the contribution of research to the generation of knowledge and to the health of future patients while gate-keepers of health facilities tended to emphasize its contribution to the healthcare system and to current patients. Furthermore, (...)
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  • Referral of Research Participants for Ancillary Care in Community-Based Public Health Intervention Research: A Guiding Framework.Maria W. Merritt, Joanne Katz, Ramin Mojtabai & Keith P. West - 2016 - Public Health Ethics 9 (1):104-120.
    Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed by our experiences (...)
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