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  1. ‘Encounters with Experience’: Empirical Bioethics and the Future. [REVIEW]Jonathan Ives - 2008 - Health Care Analysis 16 (1):1-6.
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  • Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal K enya.Dorcas M. Kamuya, Vicki Marsh, Francis K. Kombe, P. Wenzel Geissler & Sassy C. Molyneux - 2013 - Developing World Bioethics 13 (1):10-20.
    There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...)
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  • Appropriate methodologies for empirical bioethics: It's all relative.Jonathan Ives & Heather Draper - 2009 - Bioethics 23 (4):249-258.
    In this article we distinguish between philosophical bioethics (PB), descriptive policy orientated bioethics (DPOB) and normative policy oriented bioethics (NPOB). We argue that finding an appropriate methodology for combining empirical data and moral theory depends on what the aims of the research endeavour are, and that, for the most part, this combination is only required for NPOB. After briefly discussing the debate around the is/ought problem, and suggesting that both sides of this debate are misunderstanding one another (i.e. one side (...)
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  • Letting the Gene out of the bottle: A comment on returning individual research results to participants.Pilar N. Ossorio - 2006 - American Journal of Bioethics 6 (6):24 – 25.
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  • Toward Methodological Innovation in Empirical Ethics Research.Michael Dunn, Mark Sheehan, Tony Hope & Michael Parker - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (4):466-480.
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  • An anthropological perspective.Alison Shaw - 2006 - In John R. Spencer & Antje Du Bois-Pedain (eds.), Freedom and responsibility in reproductive choice. Portland, Or.: Hart.
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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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  • 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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  • Empirical ethics as dialogical practice.Guy Widdershoven, Tineke Abma & Bert Molewijk - 2009 - Bioethics 23 (4):236-248.
    In this article, we present a dialogical approach to empirical ethics, based upon hermeneutic ethics and responsive evaluation. Hermeneutic ethics regards experience as the concrete source of moral wisdom. In order to gain a good understanding of moral issues, concrete detailed experiences and perspectives need to be exchanged. Within hermeneutic ethics dialogue is seen as a vehicle for moral learning and developing normative conclusions. Dialogue stands for a specific view on moral epistemology and methodological criteria for moral inquiry. Responsive evaluation (...)
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  • Disclosing individual genetic results to research participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
    Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...)
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  • Clinical utility and full disclosure of genetic results to research participants.Richard R. Sharp & Morris W. Foster - 2006 - American Journal of Bioethics 6 (6):42 – 44.
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  • Moral Standards for Research in Developing Countries from "Reasonable Availability" to "Fair Benefits".Maged El Setouhy, Tsiri Agbenyega, Francis Anto, Christine Alexandra Clerk, Kwadwo A. Koram, Michael English, Rashid Juma, Catherine Molyneux, Norbert Peshu, Newton Kumwenda, Joseph Mfutso-Bengu, Malcolm Molyneux, Terrie Taylor, Doumbia Aissata Diarra, Saibou Maiga, Mamadou Sylla, Dione Youssouf, Catherine Olufunke Falade, Segun Gbadegesin, Reidar Lie, Ferdinand Mugusi, David Ngassapa, Julius Ecuru, Ambrose Talisuna, Ezekiel Emanuel, Christine Grady, Elizabeth Higgs, Christopher Plowe, Jeremy Sugarman & David Wendler - 2004 - Hastings Center Report 34 (3):17.
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  • Public deliberation and private choice in genetics and reproduction.M. Parker - 2000 - Journal of Medical Ethics 26 (3):160-165.
    The development of human genetics raises a wide range of important ethical questions for us all. The interpersonal dimension of genetic information in particular means that genetics also poses important challenges to the idea of patient-centredness and autonomy in medicine. How ought practical ethical decisions about the new genetics be made given that we appear, moreover, no longer to be able to appeal to unquestioned traditions and widely shared communitarian values? This paper argues that any coherent ethical approach to these (...)
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  • Intra-household relations and treatment decision-making for childhood illness: a Kenyan case study.C. S. Molyneux, G. Murira, J. Masha & R. W. Snow - 2002 - Journal of Biosocial Science 34 (1):109-132.
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