The ‘experimental public’ in longitudinal health research: views of local leaders and service providers in rural South Africa
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Kelly AH, MacGregor H, Montgomery CM. The publics of public health in Africa. Crit Public Health. 2016;27(1):1–5.
Kahn K, Tollman SM, Collinson MA, Clark SJ, Twine R, Clark BD, Shabangu M, Gómez-Olivé FX, Mokoena O, Garenne ML. Research into health, population and social transitions in rural South Africa: Data and methods of the Agincourt Health and Demographic Surveillance System. Scand J Public Health. 2007;35:8–20.
Kahn K, Collinson MA, Gomez-Olive FX, Mokoena O, Twine R, Mee P, Afolabi SA, Clark BD, Kabudula CW, Khosa A, et al. Profile: Agincourt health and socio-demographic surveillance system. Int J Epidemiol. 2012;41(4):988–1001.
Tollman S, Herbst K, Garenne M, Gear J, Kahn K. The Agincourt demographic and health study - site description, baseline findings and implications. S Afr Med J. 1999;89(8):858–64.
Lippman SA, Maman S, MacPhail C, Twine R, Peacock D, Kahn K, Pettifor A. Conceptualizing Community Mobilization for HIV Prevention: Implications for HIV Prevention Programming in the African Context. PLoS One. 2013;8(10):e78208.
Twine R, Kahn K, Scholtz A, Norris SA: Involvement of stakeholders in determining health priorities of adolescents in rural South Africa. Glob Health Action. 2016;9(0):29162.
Wagner RG, Ngugi AK, Twine R, Bottomley C, Kamuyu G, Gómez-Olivé FX, Connor MD, Collinson MA, Kahn K, Tollman S, et al. Prevalence and risk factors for active convulsive epilepsy in rural northeast South Africa. Epilepsy Res. 2014;108(4):782–91.
Pettifor A, MacPhail C, Hughes JP, Selin A, Wang J, Gómez-Olivé FX, Eshleman SH, Wagner RG, Mabuza W, Khoza N, et al. The effect of a conditional cash transfer on HIV incidence in young women in rural South Africa (HPTN 068): a phase 3, randomised controlled trial. Lancet Glob Health. 2016;4(12):e978–88.
SASPI Project Team. The prevalence of stroke survivors in rural South Africa. Stroke. 2004;35:627–32.
Participants in the 2001 Conference on Ethical Aspects of Research in Developing Countries. Fair Benefits for Research in Developing Countries. Science. 2002;298(5601):2133-4.
Lairumbi GM, Michael P, Fitzpatrick R, English MC. Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor setting particularly Africa. BMC Public Health. 2011;12:22.
Marsh VM, Kamuya DK, Parker MJ, Molyneux CS. Working with Concepts: The Role of Community in International Collaborative Biomedical Research. Public Health Ethics. 2011;4(1):26–39.
Mondain N, Bologo AE, Arduin P. Exploring respondents’ understanding and perceptions of demographic surveillance systems in Western Africa: methodological and ethical issues. Afr Popul Stud. 2010;24(3):149–65.
Molyneux S, Mulupi S, Mbaabu L, Marsh V. Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Med Ethics. 2012:13(1).
Madhavan S, Collinson MA, Townsend NW, Kahn K, Tollman SM. The implications of long term community involvement for the production and circulation of population knowledge. Demogr Res. 2007;17:369–88.
Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, Frolich J, Lavery JV. Grand Challenges in Global Health; Community Engagement in Research in Developing Countries. PLoS Med. 2007;4(9):1–5.
Allotey P, Reidpath DD, Devarajan N, Rajagobal K, Yasin S, Arunachalam D, Debora Imelda J, Soyiri I, Davey T, Jahan N, et al. Cohorts and community: a case study of community engagement in the establishment of a health and demographic surveillance site in Malaysia. Glob Health Action. 2014:7(0).
Molyneux S, Bull S. Consent and Community Engagement in Diverse Research Contexts: Reviewing and Developing Research and Practice. Participants in the Community Engagement and Consent Workshop, Kilifi, Kenya. J Empir Res Hum Res Ethics. 2011;8(4):1–18.
Guillemin M, Gillam L. Ethics, Reflexivity, and “Ethically Important Moments” in Research. Qual Inq. 2004;10(2):261–80.
Wenzel Geissler P and Molyneux C, editors. Evidence, Ethos and Experiment. The Anthropology and History of Medical Research in Africa. New York: Berghahn Books; 2011.
Marshall PA, Rotimi C. Ethical Challenges in Community-Based Research. Am J Med Sci. 2001;322(5):241–5.
Tindana P, Rozmovits L, Boulanger RF, Bandewar SVS, Aborigo RA, Hodgson AVO, Kolopack P, Lavery JV. Aligning Community Engagement With Traditional Authority Structures in Global Health Research: A Case Study From Northern Ghana. Am J Public Health. 2011;101(10):1857–67.
Molyneux S, Kamuya D, Madiega PA, Chatler T, Angwenyi V, Geissler PW. Fieldworkers at the interface. BMC Med Ethics. 2014;13(1):ii-iv.
Stadler J, Saethre E. Rumours about blood and reimbursements in a microbicide gel trial. Afr J AIDS Res. 2010;9(4):345–53.
Nuffield Council on Bioethics: Ethics of research related to healthcare in developing countries. 2002.
Carlson RV, Boyd KM, Webb DJ. The revision of the Declaration of Helsinki: past, present and future. Br J Clin Pharmacol. 2004;57:695–713.
Tekola F, Bull SJ, Farsides B, Newport MJ, Adeyemo A, Rotimi CN, Davey G. Tailoring Consent to Context: Designing an Appropriate Consent Process for a Biomedical Study in a Low Income Setting. PLoS Negl Trop Dis. 2009;3(7):e482.
Molyneux C, Mutemi N, Peshu K, Marsh VM. Trust and Informed Consent: Insights from Community Members on the Kenyan Coast. Soc Sci Med. 2005;61:1463–73.
Carrel M, Rennie S: DeBull World Health Orgmographic and health surveillance: longitudinal ethical issues 2008.pdf>. 2008;86(86):612–616.
Kamuya DM, Theobald SJ, Marsh V, Parker M, Geissler WP, Molyneux SC. “The One Who Chases You Away Does Not Tell You Go”: Silent Refusals and Complex Power Relations in Research Consent Processes in Coastal Kenya. PLoS One. 2015;10(5):e0126671.
Tindana P, De Vries J, Campbell M, Littler K, Seeley J, Marshall P, Troyer J, Ogundipe M, Alibu VP, Takubu A, et al. Community engagement strageies for genomic studies in Africa: a review of the literature. BMC Med Ethics. 2011;16:24.
Geissler PW. Kachinja are Coming!: Encounters Around Medical Research Work in a Kenyan Village. Africa. 2005;75(2);173-202.
Geissler PW, Pool R. Editorial: Popular concerns about medical research projects in sub-Saharan Africa – a critical voice in debates about medical research ethics. Trop Med Int Health. 2006;11(7):975–82.
Upshur REG, Lavery JV, Tindana PO. Taking tissue seriously means taking communities seriously. BMC Med Ethics. 2007;8:1.
Montgomery CM, Pool R. From ‘trial community; to ‘experimental publics’: how clinical research shapes public participation. Critical Public Health. 2017;27(1):50–62.
Council for International Organizations of Medical Sciences. International ethical guidelines for biomedical research involving human subjects. Bulletin of Medical Ethics. 2002;182:17.
Emanuel EJ, Wendler D, Killen J, Grady C. What Makes Clinical Research in Developing Countries Ethical? The Benchmarks of Ethical Research. J Infect Dis. 2004;189(5):930–7.
Grady C. The Challenge of Assuring Continued Post-Trial Access to Beneficial Treatment. Yale J Health Policy Law Ethics. 2013;5(1):425–36.
Collinson MA, White MJ, Bocquier P, McGarvey ST, Afolabi SA, Clark SJ, Kahn K, Tollman SM: Migration and the epidemiological transition: insights from the Agincourt sub-district of northeast South Africa. Global Health Action. 2014;1:7(1):23514.
QSR international PL: NVivo qualitative data analysis software; Version 10; 2012.
Hennink M, Hutter I, Bailey A. Qualitative Research Methods. London: SAGE Publication Ltd; 2011.
Thorogood M, Goudge J, Bertram M, Chirwa T, Eldridge S, Gómez-Olivé FX, Limbani F, Musenge E, Myakayaka N, Tollman S, et al. The Nkateko health service trial to improve hypertension management in rural South Africa: study protocol for a randomised controlled trial. Trials. 2014;2014(15):435.
Gómez-Olivé F, Angotti N, Houle B, Klipstein-Grobusch K, Kabudula C, Menken J, Williams J, S Tollman, S Clark: Prevalence of HIV among those 15 and older in rural South Africa. AIDS Care. 2013.
Kimani-Murage EW, Kahn K, Pettifor JM, Tollman SM, Dunger DB, Gomez-Olive XF, Norris SA. The prevalence of stunting, overweight and obesity, and metabolic disease risk in rural South African children. BMC Public Health. 2010;10:158-171.
Kimani-Murage EW, Kahn K, Pettifor JM, Tollman SM, Klipstein-Grobusch K, Norris SA. Predictors of adolescent weight status and central obesity in rural South Africa. Public Health Nutr. 2011;14(06):1114–22.
Tollman SM, Norris SA, Berkman LF. Commentary: The value of life course epidemiology in low- and middle-income countries: an ageing perspective. Int J Epidemiol. 2016;45:997–9.
Gómez-Olivé FX, Thorogood M, Clark B, Kahn K, Tollman S: Self-reported health and health care use in an ageing population in the Agincourtsub-district of rural South Africa. Glob Health Action. 2013;6(0);19305.
World Medical Association Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects. JAMA;2000;284(23);3043-5.
Edström J, MacGregorH. The Pipers Call the Tunes in Global Aid for AIDS: The global financial architecture for HIV funding as seen by local stakeholders in Kenya, Malawi and Zambia. Global Health Governance. 2010;4(1). http://blogs.shu.edu/ghg/2010/12/20/the-pipers-call-the-tunes-in-globalaid-for-aids/ .
Tollman, SM. Fair partnerships support ethical research. (Education and debate). British Medical Journal. 2001;323.7326(2001);1417-20.
Zong Z. Should post-trial provision of beneficial experimental interventions be mandatory in developing countries? J Med Ethics. 2008;34:188–92.
Molyneux S, Geissler PW. Ethics and the ethnography of medical research in Africa. Soc Sci Med. 2008;67(5):685–95.
Freeman PH: CBNRM and AIDS in Bushbuckridge, Northern Province, South Africa: An Exploratory Geographic Analysis: Development Ecology Information Service, USAID; 2002.