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Between a rock and a hard place: Ethical dilemmas of local community facilitators doing participatory research projects
Affiliation:1. Neurology Department, Auckland City Hospital, Auckland, New Zealand;2. Emergency Department, Auckland City Hospital, Auckland, New Zealand;3. Emergency Department, Waitemata District Health Board, Auckland, New Zealand;4. Emergency Department, Middlemore Hospital, Auckland, New Zealand;5. AUT University, Auckland, New Zealand;6. INSERM U1094, Tropical Neuroepidemiology, Limoges, France;7. Capo Laboratorio Malattie Neurologiche, Mario Negri Institute, Milan, Italy;8. Département Neurosciences Cliniques, CHUV, Lausanne, Switzerland
Abstract:Participatory research is supposed to involve participants in a collective definition of goals, and the co-production and sharing of research outputs. However, when articulated through an extended period of time involving a range of local, national and international actors, the practicalities of participatory research means that certain groups and individuals become responsible for taking leading roles, with subsequent ethical dilemmas. In the ‘Community-owned solutions for future environmental challenges in the Guiana Shield, South America’ (COBRA) project, the participatory research process involves a group of five Indigenous researchers – “the local team” – in charge of carrying out the research on the ground e.g. defining procedures, carrying out community engagement and supporting the communities in analyzing and disseminating the material. This local team is, in turn, supported by researchers from a national NGO and foreign academics.Considerable responsibility has been given to the local team for achieving project outcomes, and freedom in defining project tasks and activities. This paper analyses the multiple ethical dilemmas arising out of this situation, particularly the role of the local team as intermediaries between the wider community and project partners. We highlight the existence of significant mismatches between research expectations, and the ethical processes in operation at community level which are usually established on long-term, tacit and reciprocal relationships. We discuss how local community researchers are challenged with balancing the tensions between these two ethical polarities, while at the same time producing participatory research outcomes that are acceptable by everyone involved.
Keywords:Participatory research  Ethics  Community facilitators  Local researchers  Indigenous  Participatory video
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