Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Papers resulting from Cross-MOP Collaborations
Lwin, K. , Peto, T. , White, N. , Day, N. , Nosten, F. , Parker, M. and Cheah, P. (2013) The practicality and sustainability of a community advisory board at a large medical research unit on the Thai-Myanmar border. Health, 5, 229-236. doi: 10.4236/health.2013.52031 [This is an open access article]
Participants in the Community Engagement and Consent Workshop, Kilifi, Kenya, March 2011 (2013) Consent and Community Engagement in Diverse Research Contexts: Reviewing and Developing Research and Practice. J of Empirical Research on Human Research Ethics, 8(4), 1-18. DOI: 10.1525/jer.2013.8.4.1 [This is an open access article]
Sassy, Dorcas, Vicki and others have an introduction and four papers published in April 2013 in Developing World Bioethics: Special Issue - Field Workers at the interface between research institutions and local communities.
These papers are all available either for free or are open access, so if you cannot access them from the links below, please let me know.
The 4 papers from Kilifi are:
FEAST study consent paper published: Molyneux CS, Njue M, Boga M, Akello L, Olupot-Olupot P, Engoru C, Kiguli S, K Maitland (2013). The words will pass with the blowing wind': staff and parent views of the deferred consent process with prior assent used in an emergency fluids trial in two African hospitals, PLOS One, in press.
Vicki Marsh, George Mocamah, Emmanuel Mabibo, Francis Kombe & Thomas N. Williams (2013): The “Difficult Patient” Conundrum in Sickle Cell Disease in Kenya: Complex Socio-political Problems Need Wide Multidimensional Solutions, The American Journal of Bioethics, 13:4, 20-22. http://dx.doi.org/10.1080/15265161.2013.767960
George Okello, Caroline Jones , Maureen Bonareri, Sarah N Ndegwa, Carlos Mcharo, Juddy Kengo, Kevin Kinyua, Margaret M Dubeck, Katherine E Halliday, Matthew CH Jukes, Sassy Molyneux & Simon J Brooker. Challenges for consent and community engagement in the conduct of cluster randomized trial among school children in low income settings: experiences from Kenya. Trials 2013, 14:142 doi:10.1186/1745-6215-14-142. PMID:23680181
Part of the Developing World Bioethics Special issue listed above:
Chantler, T., Otewa, F., Onyango, P., Okoth, B., Odhiambo, F., Parker, M. and Geissler, P. W. (2013), Ethical Challenges that Arise at the Community Interface of Health Research: Village Reporters’ Experiences in Western Kenya. Developing World Bioethics, 13: 30–37. doi: 10.1111/dewb.12023 [This is an Open Access paper].
Patricia has written a paper on fieldworkers' and how they experience/deal with death & dying among research participants. This has been written up and submitted to the Cambridge Quarterly Health Care Ethics. Will be out in December. [Exact title of paper will be provided soon.]
Kingori, P. Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics, Social Science & Medicine 98 (2013) 361-370, doi: 10.1016/j.socscimed.2013.10.013. [A PDF of this paper is available here. Please use this only for educational purposes.]
Salla has also been working on a paper on gender and experimentation. Submitted to the Journal of Feminist Approaches in Bioethics.
Patricia is guest editing a Special Issue of Bioethics in the Field, coming out end of 2013. Has a paper in it. Paper has been accepted. [Title will be provided soon!]
Malawi Liverpool Programme
Eleanor MacPherson, John Sadalaki, Victoria Nyongopa, Lawrence Nkhwazi, Mackwellings Phiri, Alinafe Chimphonda, Nicola Desmond, Victor Mwapasa, David G. Lalloo, Janet Seeley, Sally Theobald “You think you can manage to feed your family, while you are selling your life by taking a loan:” Exploring the complexity of microfinance and HIV in fishing communities on the shores of Lake Malawi Submitted to Review of African Political Economy
Peter MacPherson, David G Lalloo, Emily L Webb, Augustine T Choko, Simon D Makombe, Anthony E Butterworth, Joep J van Oosterhout, Nicola Desmond, Deus Thindwa, S Bertel Squire, Richard J Hayes, Elizabeth L Corbett. Home assessment and initiation of ART following HIV self-testing: a cluster randomised trial to improve uptake of ART in Blantyre, Malawi . Submitted to The Lancet
Peter MacPherson, David G Lalloo, Deus Thindwa, Emily L Webb, S Bertel Squire, Geoffrey Chipungu, Nicola Desmond, Andreas Jahn Simon D Makombe, Miriam Taegtmeyer, Augustine T Choko, Elizabeth L Corbett. A novel community health worker tool outperforms WHO clinical staging for assessment of antiretroviral therapy eligibility in a resource-limited setting. Journal of International AIDS Society, in press
Ayesha Kadir, Nicola Desmond, Frederick Marais. Community perceptions of the social determinants of child health in Western Cape, South Africa: Neglect as a major predictor of child health and wellbeing. Pediatrics & International Child Health. In press
Hanefield, J., Bond, V., Seeley, J., Lees, S., Desmond, N., Considerations for a human rights impact assessment of a universal test and treat intervention. Accepted for Special Issue of Developing World Bioethics: Ethical Considerations in the Use of Anti-retrovirals for HIV
Nicola Desmond, Deborah Nyirenda, Elizabeth Molyneux, MacPherson Mallewa, David Lalloo, Robert S. Heyderman. Recognition and actionto tackle acute bacterial meningitis in urban Blantyre, Malawi. Plos One 2013 Vol 8 Iss 7 e68163.
Phaik Yeong's Consent & assent paper has been submitted to BMC Medical Ethics.
Decha Tangseefa. (2006) ‘Taking flight in condemned grounds: forcibly displaced Karens and the Thai-Burmese in-between spaces,’ Alternatives: Global, Local, Political, 31(4): 405-30.
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