"Our brains would be nothing, without yours": managing anxiety and expectations in a dementia research community
Sally Atkinson (University of Exeter)
Paper short abstract:
I explore leading neuroscientists' research into dementia disorders, where the pressures of science meet complex anxieties about capacity, consent, funding and success. I use ethnographic data to demonstrate researchers' creative use of images to manage perceived issues of risk and uncertainty.
Paper long abstract:
Based on ethnographic research within a UK dementia research community, this paper explores leading researchers as a self-conscious, urban elite within the disease awareness movement. I focus on scientists' rhetorical use of images to constitute knowledge and practice which creatively manages uncertainties in the relationship between scientists, patients and publics in dementia research. In the fierce competition for social, political and economic support for disease research, dementias are increasingly characterised as the leading public health issue of our time; placing researchers at the forefront of public debate on how to live with, understand and treat this insidious range of diseases linked primarily with the ubiquitous fact of aging. The scientific community are keenly aware that success depends on attracting researchers, funders and participants, whilst managing the delicate boundaries surrounding governance and participant protection and inclusion; capacity to consent, the uncertain benefits and expectations of participation, and the efficacy of existing treatments. These uncertainties are manifest in the narratives on the scientific process and public engagement: Should research be commercially or publicly driven? Should researchers talk about 'fighting' dementia, or 'living well' with its impact? Should trial recruitment and participation be encouraged as an act of altruism or pragmatic necessity? The elaborate and strategic use of image and imagery in public-science discourse is, I argue, a tool for managing anxieties, and promoting future research support. These creative practices mobilise a reflexive and adaptive process which in turn drives the research process forward. I argue that these creative interactions beyond the laboratory demonstrate how scientists' pragmatic engagements with society influence the future of clinical research (Martin 1998). This reveals a dynamic, evolving research community, whose continual questioning is central to the evolution of scientific and social understanding of dementia research and treatment.
Anxiety at the top (EN)