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  1. Grappling with groups: Protecting collective interests in biomedical research.Richard R. Sharp & Morris W. Foster - 2007 - Journal of Medicine and Philosophy 32 (4):321 – 337.
    Strategies for protecting historically disadvantaged groups have been extensively debated in the context of genetic variation research, making this a useful starting point in examining the protection of social groups from harm resulting from biomedical research. We analyze research practices developed in response to concerns about the involvement of indigenous communities in studies of genetic variation and consider their potential application in other contexts. We highlight several conceptual ambiguities and practical challenges associated with the protection of group interests and argue (...)
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  • Community Members Employed on Research Projects Face Crucial, Often Under-Recognized, Ethical Dilemmas.Sassy Molyneux, Dorcas Kamuya & Vicki Marsh - 2010 - American Journal of Bioethics 10 (3):24-26.
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  • Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. [REVIEW]Sassy Molyneux, Stephen Mulupi, Lairumbi Mbaabu & Vicki Marsh - 2012 - BMC Medical Ethics 13 (1):13-.
    BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome (...)
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  • Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.M. Mlamba Albert, M. Kamuya Dorcas, M. Marsh Vicki, N. Williams Thomas & S. Molyneux Sassy - 2010 - BMC Medical Ethics 11 (1):13.
    Background The potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' (...)
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  • Working with Concepts: The Role of Community in International Collaborative Biomedical Research.V. M. Marsh, D. K. Kamuya, M. J. Parker & C. S. Molyneux - 2011 - Public Health Ethics 4 (1):26-39.
    The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that (...)
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  • Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.V. M. Marsh, D. M. Kamuya, A. M. Mlamba, T. N. Williams & S. S. Molyneux - 2010 - BMC Medical Ethics 11 (1):13-13.
    BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...)
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  • Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study.Fasil Tekola, Susan Bull, Bobbie Farsides, Melanie J. Newport, Adebowale Adeyemo, Charles N. Rotimi & Gail Davey - 2009 - BMC Medical Ethics 10 (1):13-.
    BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...)
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  • Protecting Communities in Biomedical Research.Charles Weijer & E. J. Emanuel - unknown
    Although for the last 50 years, ethicists dealing with human experimentation have focused primarily on the need to protect individual research subjects and vulnerable groups, biomedical research, especially in genetics, now requires the establishment of standards for the protection of communities. We have developed such a strategy, based on five steps. (i) Identification of community characteristics relevant to the biomedical research setting, (ii) delineation of a typology of different types of communities using these characteristics, (iii) determination of the range of (...)
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