4 found
  1.  59
    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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  2.  29
    Knowing Who to Trust: Exploring the Role of 'Ethical Metadata' in Mediating Risk of Harm in Collaborative Genomics Research in Africa.Jantina de Vries, Thomas N. Williams, Kalifa Bojang, Dominic P. Kwiatkowski, Raymond Fitzpatrick & Michael Parker - 2014 - BMC Medical Ethics 15 (1):62.
    The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...)
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  3.  35
    Benefits and Payments for Research Participants: Experiences and Views From a Research Centre on the Kenyan Coast.M. Marsh Vicki, M. Kamuya Dorcas, M. Mlamba Albert, N. Williams Thomas & S. Molyneux Sassy - 2010 - BMC Medical Ethics (1):13-.
    Background: There 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 (...)
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    The “Difficult Patient” Conundrum in Sickle Cell Disease in Kenya: Complex Sociopolitical Problems Need Wide Multidimensional Solutions.Vicki Marsh, George Mocamah, Emmanuel Mabibo, Francis Kombe & Thomas N. Williams - 2013 - American Journal of Bioethics 13 (4):20 - 22.
    (2013). The “Difficult Patient” Conundrum in Sickle Cell Disease in Kenya: Complex Sociopolitical Problems Need Wide Multidimensional Solutions. The American Journal of Bioethics: Vol. 13, No. 4, pp. 20-22. doi: 10.1080/15265161.2013.767960.
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