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  1. 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 (LMIC) 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 (...)
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  • The value of communities and their consent: A communitarian justification of community consent in medical research.Pepijn Al - 2020 - Bioethics 35 (3):255-261.
    Community engagement is increasingly defended as an ethical requirement for biomedical research. Some forms of community engagement involve asking the consent of community leaders prior to seeking informed consent from community members. Although community consent does not replace individual consent, it could problematically restrict the autonomy of community members by precluding them from research when community leaders withhold their permission. Community consent is therefore at odds with one of the central principles of bioethics: respecting autonomy. This raises the question as (...)
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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 (CE) 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 health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE (...)
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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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  • Managing community engagement in research in Uganda: insights from practices in HIV/aids research.Nancy E. Kass & John Barugahare - 2022 - BMC Medical Ethics 23 (1):1-12.
    BackgroundCommunity engagement in research is valuable for instrumental and intrinsic reasons. Despite existing guidance on how to ensure meaningful CE, much of what it takes to achieve this goal differs across settings. Considering the emerging trend towards mandating CE in many research studies, this study aimed at documenting how CE is conceptualized and implemented, and then providing context-specific guidance on how researchers and research regulators in Uganda could think about and manage CE in research.MethodsWe conducted qualitative interviews and focus group (...)
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  • (1 other version)‘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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  • 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.Kathleen M. MacQueen, Anant Bhan, Janet Frohlich, Jessica Holzer & Jeremy Sugarman - 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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  • Reflections on the ethics of participatory visual methods to engage communities in global health research.Gillian F. Black, Alun Davies, Dalia Iskander & Mary Chambers - 2017 - 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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  • Health‐related Research Ethics and Social Value: Antibiotic Resistance Intervention Research and Pragmatic Risks.Christian Munthe, Niels Nijsingh, Karl Fine Licht & D. G. Joakim Larsson - 2019 - Bioethics 33 (3):335-342.
    We consider the implications for the ethical evaluation of research programs of two fundamental changes in the revised research ethical guideline of the Council for International Organizations of Medical Sciences. The first is the extension of scope that follows from exchanging “biomedical” for “health‐related” research, and the second is the new evaluative basis of “social value,” which implies new ethical requirements of research. We use the example of antibiotic resistance interventions to explore the need to consider the instances of what (...)
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  • (1 other version)'Wicked problems, community engagement and the need for an implementation science for research ethics.James V. Lavery - 2018 - Journal of Medical Ethics Recent Issues 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 (...)
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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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  • How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.Josephine Borthwick, Natalia Evertsz & Bridget Pratt - 2023 - BMC Medical Ethics 24 (1):1-15.
    Background There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. (...)
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  • Taming Wickedness: Towards an Implementation Framework for Medical Ethics.Erin Taylor - 2022 - Health Care Analysis 30 (3):197-214.
    “Wicked” problems are characterized by intractable complexity, uncertainty, and conflict between individuals or institutions, and they inhabit almost every corner of medical ethics. Despite wide acceptance of the same ethical principles, we nevertheless disagree about how to formulate such problems, how to solve them, what would _count_ as solving them, or even what the possible solutions _are_. That is, we don’t always know how best to implement ethical ideals in messy real-world contexts. I sketch an implementation framework for medical ethics (...)
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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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  • A youth advisory group on health and health research in rural Cambodia.Mom Ean, Rupam Tripura, Phann Sothea, Uch Savoeun, Thomas J. Peto, Sam Bunthynn, James J. Callery, Ung Soviet, Lek Dysoley, Phaik Yeong Cheah & Bipin Adhikari - 2024 - Global Bioethics 35 (1).
    Engaging young people in health research has been promoted globally. We explored the outcomes of youth advisory group on health and research engagement (YAGHRE) in rural Cambodia. In May 2021, the Mahidol Oxford Tropical Medicine Research Unit (MORU) partnered with a local health centre and a secondary school to establish a youth engagement group. Ten students underwent training and led health engagement activities in schools and communities. Activities were documented as field notes and audio-visual materials which underwent content analysis using (...)
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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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  • 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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  • 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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  • 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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  • 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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