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Therapeutic Research in Low-Income Countries: Studying Trial Communities

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Abstract

Social scientists undertaking studies in developing countries focus on ‘trial communities’: networks of funders, institutions, researchers, clinical staff, fieldworkers, and study participants. Whereas bioethicists consider universal ethical requirements, social scientists examine ethical practices in light of concerns and interests of parties involved in medical research. In conditions of poverty, high morbidity and weak public health services, subjects are heavily induced by the prospect of high quality care that researchers seem to offer. Studies of health research undertaken by well-established institutions in Africa show that parents eagerly have their children ‘join’ such projects. They assess benefits and risks less in research terms and more through overall trust in care provided previously by such institutions in the community. Bioethics should go beyond concern with protecting individual subjects from research risks and should view clinical care and research functions as indistinguishable for many who seek sustained support for the children’s health.

First published April 19, 2014 as 10.1136/archdischild-2013-304852. Republished with permission.

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References

  1. Hoeyer K, Dahlager L, Lynöe N. Conflicting notions of research ethics: the mutually challenging traditions of social scientists and medical researchers. Soc Sci Med. 2005;61:1741–9.

    Article  PubMed  Google Scholar 

  2. Adams V. Evidence based global public health: subjects, profits, erasures. In: Biehl J, Petryna A, editors. When people come first: critical studies in global health. Princeton: Princeton University Press; 2013. p. 54–90.

    Google Scholar 

  3. Khairun NB, Aripin N, Sammons HM, Choonara I. Published pediatric randomized drug trials in developing countries, 1996–2002. Paediatr Drugs. 2010;12:99–103.

    Article  Google Scholar 

  4. 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;189:930–7.

    Article  PubMed  Google Scholar 

  5. Farmer P. The New malaise: medical ethics and social rights in the global era. In: Pathologies of power. Berkeley: University of California Press; 2003.

    Google Scholar 

  6. Lang TA, Gould J, Seidlein L, Lusingu JP, Mshamu S, Ismael S, et al. Approaching the community about screening children for a multicentre malaria vaccine trial. Int Health. 2012;4:47–54.

    Article  CAS  PubMed  Google Scholar 

  7. Christopher JB, May AL, Lewin S, Ross DA. Thirty years after Alma-Ata: a systematic review of he impact of community health workers delivering curative interventions against malaria, pneumonia and diarrhoea on child mortality and morbidity in sub-Saharan Africa. Hum Resour Health. 2011;9:27.

    Article  PubMed Central  PubMed  Google Scholar 

  8. Molyneux S, Geissler PW. Ethics and the ethnography of medical research in Africa. Soc Sci Med. 2008;67:685–95.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Kelly A, Geissler W. Introduction: the value of transnational medical research. J Cult Econ. 2011;4:3–10.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Molyneux S, Giessler PW, et al. Field workers at the interface. Deve World Bioeth. 2013; 13(1):2–4.

    Google Scholar 

  11. Geissler PW, Molyneux CS, editors. Evidence, ethos and experiment: the anthropology and history of medical research in Africa. Oxford: Berghahn; 2011.

    Google Scholar 

  12. Geissler PW. Studying trial communities: anthropological and historical inquiries into ethos, politics and economy of medical research in Africa. In: Geissler PW, Molyneux C, editors. Evidence, ethos and experiment: the anthropology and history of medical research in Africa. Oxford: Berghahn; 2011. p. 1–28.

    Google Scholar 

  13. Geissler PW. ‘Transport to where?’ Reflections on the problem of value and time àpropos an awkward practice in medical research. J Cult Econ. 2011;4:45–64.

    Article  PubMed Central  PubMed  Google Scholar 

  14. Fairhead J, Leach M, Small M. Public engagement with science? local understandings of a vaccine trial in the Gambia. J Biosoc Sci. 2006;38:103–16.

    Article  PubMed  Google Scholar 

  15. Whyte SR. Writing knowledge and acknowledgement: possibilities in medical research. In: Geissler PW, Molyneux CS, editors. Evidence, ethos and experiment: the anthropology and history of medical research in Africa. Oxford: Berghahn; 2011. p. 29–56.

    Google Scholar 

  16. Marsh V, Kamuya D, Rowa Y, Gikonyo C, Molyneux S. Beginning community engagement at a busy biomedical research programme: experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Soc Sci Med. 2008;67:721–33.

    Article  PubMed Central  PubMed  Google Scholar 

  17. Molyneux CS, Peshu N, Marsh K. Trust and informed consent: insights from community members on the Kenyan coast. Soc Sci Med. 2005;61:1463–73.

    Article  CAS  PubMed  Google Scholar 

  18. Petryna A. When experiments travel: clinical trials and the global search for human subjects. Princeton University Press: Princeton; 2009.

    Book  Google Scholar 

  19. Nama N, Swartz L. Ethical and social dilemmas in community-based controlled trials in situations of poverty: a view from a South African project. J Community Appl Soc Psychol. 2002;12:286–97.

    Article  PubMed  Google Scholar 

  20. Leach M, Fairhead J. Being ‘with the Medical Research Council’: infant care and the social meanings of cohort membership in Gambia’s plural therapeutic landscapes. In: Geissler PW, Molyneux CS, editors. Evidence, ethos and experiment: the anthropology and history of medical research in Africa. Oxford: Berghahn; 2011. p. 77–98.

    Google Scholar 

  21. Gikonyo C, Bejon P, Marsh V, Molyneux S. Taking social relationships seriously: lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast. Soc Sci Med. 2008;67:708–20.

    Article  PubMed Central  PubMed  Google Scholar 

  22. Newton S, Doku V, Geissler W, Asante K, Cousens S. Drawing blood from young children: lessons learned from a trial in Ghana. Trans R Soc Trop Med Hyg. 2009;103:497–9.

    Article  PubMed  Google Scholar 

  23. Geissler PW. ‘Kachinja are coming!’: encounters around medical research work in a Kenyan village. Africa. 2005;75:173–202.

    Article  Google Scholar 

  24. Gikonyo C, Kamuya D, Mbete B, Njuguna P, Olotu A, Bejon P, et al. Feedback of research findings for vaccine trials: experiences from two malaria vaccine trials involving healthy children on the Kenyan coast. Dev World Bioeth. 2013;13:48–56.

    Article  PubMed Central  PubMed  Google Scholar 

  25. Emanuel EJ, Currie XE, Herman A, Project Phidisa, et al. Undue inducement in clinical research in developing countries? Is it a worry? Lancet. 2005;366(9482):336–40.

    Google Scholar 

  26. Molyneux CS, Wassenaar DR, Peshu N, Marsh K. ‘Even if they ask you to stand by a tree all day, you will have to do it (laughter)…!’: Community voices on the notion and practice of informed consent for biomedical research in developing countries. Soc Sci Med. 2005;61:443–54.

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

The author acknowledges financial and collegial support from the project ‘Quality Medicine Use for Children in Uganda’ funded by the Danish Consultative Committee for Development Research. The paper is inspired by the 2005 conference in Kilifi, Kenya, on ‘Studying Trial Communities’ and the ensuing publications. I have no competing interests to declare.

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Authors and Affiliations

  1. Department of Anthropology, University of Copenhagen, Copenhagen, Denmark

    Susan Reynolds Whyte PhD

  2. Child Health and Development Centre, Makerere University, Kampala, Uganda

    Susan Reynolds Whyte PhD

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  1. Susan Reynolds Whyte PhD
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Correspondence to Susan Reynolds Whyte PhD .

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Editors and Affiliations

  1. Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada

    Stuart MacLeod

  2. University of Melbourne Medical School, Melbourne, VIC, Australia

    Suzanne Hill

  3. Departments of Pediatrics and Pharmacology, University of Toronto, Toronto, Ontario, Canada

    Gideon Koren

  4. Department of Laboratory Medicine, Division of Clinical Pharmacology, Karolinska University, Hostpital Karolinska Institutet, Stockholm, Sweden

    Anders Rane

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Reynolds Whyte, S. (2015). Therapeutic Research in Low-Income Countries: Studying Trial Communities. In: MacLeod, S., Hill, S., Koren, G., Rane, A. (eds) Optimizing Treatment for Children in the Developing World. Adis, Cham. https://doi.org/10.1007/978-3-319-15750-4_5

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  • DOI: https://doi.org/10.1007/978-3-319-15750-4_5

  • Publisher Name: Adis, Cham

  • Print ISBN: 978-3-319-15749-8

  • Online ISBN: 978-3-319-15750-4

  • eBook Packages: MedicineMedicine (R0)

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