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Accepted Paper:
The rabbit hole of ethics approval: Addressing ethical regulations in medical ethnographic research involving people with dementia in the UK
Cristina Douglas
(University of Aberdeen)
In my presentation, I discuss the peculiarities of the ethical process, the moral conundrums and the disciplinary restrictions that a medical anthropologist faces in carrying ethnographic research involving people with dementia in Scotland, UK.
Paper long abstract:
Fieldwork has always been envisioned in ethnographic research as open, interceding surprise, spontaneity and 'accidents' in order to create grounded theories and anthropological knowledge. While this is not excluded in clinical research, the ethical and legal approvals that are required in most Western countries for medical anthropological research in general and with adults with incapacity of consenting in particular frame a different path of getting into the field. The process of getting ethical approvals, without which no research task can be undertaken, follow the so-called clinical gold standard of research. This is characterised by huge bureaucracy; a labyrinthic following of rules, responsibilities and regulations that are passed between various bodies, which slow down the process; as well as a conceptual envisioning of what should be done (the clinical trial model) which contradicts the very core of anthropological endeavour. In my presentation, I discuss the peculiarities of the ethical process, the moral conundrums and the disciplinary restrictions that a medical anthropologist faces in carrying research involving people with dementia in Scotland, UK. I follow my own experience of getting the ethical approvals for carrying ethnographic research with people living with dementia in care facilities and therapy-animals, as well as accounts from fellow social scientists facing similar difficulties. I further discuss how ethical codes of our discipline are contested by these ethical regulations and how we, as social scientists, can and should contribute to a decongestion of the ethical approval system that endanger ethnographic research involving human participants cognitively impaired.