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Neuroscience: Heading Toward ‘The Decade of the Brain’

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Neuroscience: Heading Toward ‘The Decade of the Brain’ Durham E-Theses Collaborations, Connections & Participation: An ethnographic study of dementia research in the UK ATKINSON, SALLY,ANN How to cite: ATKINSON, SALLY,ANN (2015) Collaborations, Connections & Participation: An ethnographic study of dementia research in the UK, Durham theses, Durham University. Available at Durham E-Theses Online: http://etheses.dur.ac.uk/11183/ Use policy The full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-prot purposes provided that: • a full bibliographic reference is made to the original source • a link is made to the metadata record in Durham E-Theses • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders. Please consult the full Durham E-Theses policy for further details. Academic Support Oce, Durham University, University Oce, Old Elvet, Durham DH1 3HP e-mail: [email protected] Tel: +44 0191 334 6107 http://etheses.dur.ac.uk 2 Title: Collaborations, Connections & Participation: An ethnographic study of dementia research in the UK Author: Sally Ann Atkinson This thesis examines the question: How is biomedical research in the field of dementia enacted? I address this question using ethnographic fieldwork, interviews and document analysis conducted between September 2010 and March 2014, which examine the relations involved in the emergence of a national dementia research agenda in the UK. Over the last decade in the UK ‘dementia’ has become characterised as the public health crisis of our time. The sense of crisis around the conditions covered by this umbrella term is exacerbated by a global trend toward increased longevity and acute awareness of the limitations of existing treatments. In 2011 the UK Department of Health, in collaboration with national research organisations, announced the launch of an integrated dementia research strategy. Taking a historical and emergent perspective on research into aging, neurodegenerative diseases and the concept of ‘dementia’, this examination demonstrates how the evolving research initiative marks a shift in the process of co-production which exists between science, policy and publics in the UK. Using a detailed examination of linguistic and visual material from the perspective of science policy and practice, the thesis demonstrates how shifts in biotechnology make conditions described under the umbrella of ‘dementias’ differently visible. The scientific narratives which accompany this changing visibility, present dementias as a challenging target for social and scientific intervention. In response to this complexity, the research agenda focuses on the relationships and interactions between the multiple stakeholders involved. A rhetoric-based analysis demonstrates how researchers use such collaborations to try and remake the connections between aging, dementia, science and social responsibility. I argue that this process of breaking and remaking such connections is part of persuasive attempt to embed patients, participants and publics in the conduct of clinical research. This ethnographic description demonstrates how this process of embedded engagement is not without challenge. Researchers feel increasingly exposed to public expectations and frustrations which exist beyond the control of the ‘citadel’ of science (Martin 1998). Thus through cyclical re-workings of narratives of success and failure, hope and possibility, researchers involved in the development of new interventions for dementia diagnosis and treatment attempt to balance the tension between the rhetoric of future potential products and their day-to-day experience of the scientific process. Thus the thesis demonstrates how the development of new interventions is a continual negotiation of uncertainties and anxieties for both researchers and their participants. The thesis contributes to a growing literature on the complexity of biomedical research and knowledge making. 1 Collaborations, Connections and Participation: An ethnographic study of dementia research in the UK Sally A. Atkinson Thesis submitted for the degree of Doctor of Philosophy Department of Anthropology Durham University 2014 2 Table of Content Table of figures ............................................................................................................................ 5 List of Acronyms ......................................................................................................................... 7 Acknowledgements ..................................................................................................................... 8 Chapter 1 Introduction: Complexity in the study of biomedical research ....................... 9 An overview of the thesis. .................................................................................................... 22 Chapter 2 Dementia science in context .............................................................................. 27 Age, chronic disease and emergent technologies ................................................................. 28 Dementia: A brief historical perspective .............................................................................. 31 An evolving pathology: pre-senile dementia and twentieth century neurophysiology, laboratory cellular imaging techniques ................................................................................. 34 The Diagnostic Standard Manual and the International Classification of Disease ........... 39 Neuroscience: Heading toward ‘The Decade of the Brain’ ................................................. 43 Dementia research in the context of the UK National Health Service: health economics, standards and regulations ..................................................................................................... 49 Chapter 3 The emergence of the ‘field’ ............................................................................... 63 A turn of events: the national dementia research call ......................................................... 63 A complex field of multiple stake holders .................................................................................... 66 Developing relations and addressing access: working inward and studying up ............................... 67 Experts & elites ........................................................................................................................ 68 DeNDRoN and the NMR Centre ............................................................................................. 70 Social relations in clinical research....................................................................................... 73 Government, industry and the market in dementia research ........................................................ 74 Negotiating access to NHS dementia research: capitulating to the hydra ...................................... 75 DeNDRoN as a gatekeeping institution ..................................................................................... 80 Unexpected connections: the role of ‘para-scientific’ relations ....................................................... 81 The virtual and visual in dementia research ............................................................................... 82 Conclusion: on the thickness and thinness of ethnographic data ...................................... 84 Chapter 4 The burden of dementia - a ‘problem’ for science and society? ........................ 86 Rhetoric and rhetorical analysis in anthropology and science studies ................................ 86 The language of burden in dementia research. ..................................................................... 88 Tracing the etymology of burden ................................................................................................ 96 3 Perceived problems in dementia science: barking up some wrong trees .......................... 102 Research involving cognitive impairment, aging and chronic disease ........................................... 114 Challenges in research organisation and infrastructure .............................................................. 118 The burdens of dementia research ....................................................................................... 121 Chapter 5 The rhetoric of risk: the construction of a persuasive crisis. ........................... 125 ‘The impending storm’: dementia & the language of urgency and emergency ................ 127 Dementia as flood ............................................................................................................... 129 Scales of risk ........................................................................................................................ 139 Creating research responsibility ......................................................................................... 155 Chapter 6 Making and breaking connections in dementia research. .............................. 157 Breaking connections: Restructuring relations with dementia ......................................... 158 This is not normal aging ..................................................................................................... 158 Changing Age ........................................................................................................................ 161 The economics of later life ......................................................................................................
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