Dorcas M. Kamuya, Sally J. Theobald, Patrick K. Munywoki, Dorothy Koech, Wenzel P. Geissler & Sassy C. Molyneux
Developing World Bioethics 13 (1):1-9 (2013)
Abstract |
Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes
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Keywords | field workers consent processes household studies benefit sharing developing countries social relations research ethics |
Categories | (categorize this paper) |
DOI | 10.1111/dewb.12009 |
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References found in this work BETA
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.
Community Members as Recruiters of Human Subjects: Ethical Considerations.Christian Simon & Maghboeba Mosavel - 2010 - American Journal of Bioethics 10 (3):3-11.
Community Members Employed on Research Projects Face Crucial, Often Under-Recognized, Ethical Dilemmas.Sassy Molyneux, Dorcas Kamuya & Vicki Marsh - 2010 - American Journal of Bioethics 10 (3):24-26.
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.
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-.
View all 6 references / Add more references
Citations of this work BETA
Community Engagement Strategies for Genomic Studies in Africa: A Review of the Literature. [REVIEW]Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu & Michael Parker - 2015 - BMC Medical Ethics 16 (1):24.
Exploring Researchers’ Experiences of Working with a Researcher-Driven, Population-Specific Community Advisory Board in a South African Schizophrenia Genomics Study.Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar & Dan J. Stein - 2015 - BMC Medical Ethics 16 (1):1-9.
Ethical Issues in the Export, Storage and Reuse of Human Biological Samples in Biomedical Research: Perspectives of Key Stakeholders in Ghana and Kenya.Paulina Tindana, Catherine S. Molyneux, Susan Bull & Michael Parker - 2014 - BMC Medical Ethics 15 (1):76.
“When They See Us, It’s Like They Have Seen the Benefits!”: Experiences of Study Benefits Negotiations in Community-Based Studies on the Kenyan Coast.Dorcas M. Kamuya, Vicki Marsh, Patricia Njuguna, Patrick Munywoki, Michael Parker & Sassy Molyneux - 2014 - BMC Medical Ethics 15 (1):90.
“Not Just Dogs, but Rabid Dogs”: Tensions and Conflicts Amongst Research Volunteers in Malawi.Mackwellings Phiri, Kate Gooding, Deborah Nyirenda, Rodrick Sambakunsi, Moses Kelly Kumwenda & Nicola Desmond - 2018 - Global Bioethics 29 (1):65-80.
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