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After genetics: Huntington's disease, local data, global neuroscience.

Hughes, Jacqueline 2010. After genetics: Huntington's disease, local data, global neuroscience. PhD Thesis, Cardiff University.

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A 36 month ethnographic study of a research clinic with a combined role of disease management, included non participant observation of clinic routines, neurological consultations, motor and cognitive research testing of patients, plus interviews with patients, carers, clinicians, researchers and others associated with the clinic. A 'shift' of Huntington's disease into neurology was observed plus standardisation of research activities on an international scale. The clinic acts as a recruitment site for other experimental research. Research questions were - does a neurological instead of genetic framework make a difference to how the disease is regarded, and, what does research participation mean for patients and clinicians A neurological framework appeared to encourage research participation because patients and carers considered it an opportunity for experimental treatment, including stem cell transplantation to the brain. Three analytic themes revealed: 'blurring' in operation of research and care, performances by all clinic actors linked to social and research expectations, plus the neurology framework increased patients' hopes in research aims. Sub themes included biomedicalisation, research translation, emotional work, research limitations, social benefits and transplant hope. Clinic researchers noticed tension in their dual research/care role, patients and carers noticed they were given time but little practical care.

Item Type: Thesis (PhD)
Status: Unpublished
Schools: Centre for Economic and Social Aspects of Genomics (CESAGen)
Subjects: Q Science > QH Natural history > QH426 Genetics
R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
ISBN: 9781303196027
Date of First Compliant Deposit: 30 March 2016
Last Modified: 18 Dec 2017 11:37

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