Living Data: Making sense of health biosensors
Adrian Mackenzie, Celia Roberts and Maggie Mort
A basic question arises as health and environmental biosensors move outside clinical, laboratory and institutional settings: how do people make sense of health-related data? The process of making sense of such data occurs through forms of collecting, communication, analysis and interpretation that crisscross people, institutions, other measurements, monitoring and media. When the data concerns highly significant life changes such as pregnancy, long-term health prospects or serious illness, the social life of biosensor data and health-related information becomes highly fraught. People’s relation to medical expertise and health systems are profoundly challenged as access to and control over data shifts. Problems of interpretation, understanding, judgment, trust, and confidentiality occur. Additionally, health awareness deriving from biosensors cannot be separated from other concerns and practices of family, social life, work, leisure, media and consumption. This project empirically addresses two key questions: how do people make sense of sensor data? And how do they fit health-monitoring data into their everyday lives?
AimsThe research will investigate two significant processes in contemporary middle-class life: conception and pregnancy, and perceptions of health-related risk derived from direct to consumer personal genomics tests. The project is divided into two ethnographic case studies (each to be a PhD research project) and culminates in a Citizens’ Panel which will elaborate and discuss the common themes arising from the two studies. The project will thus produce two kinds of data: rich, empirically dense ethnographic description of contemporary engagements with biosensing, and exploratory, responsive data from current non-users (citizens).
The research in divided into two constrasting and complementary case studies which will use mixed methods that address the temporality of personal health data practices and the social life of data. The first, focused on conception and pregnancy, highlights a specific highly socialised, intensely experienced somatic process. The second, centred on Direct To Consumer genetic testing focuses on a whole spectrum of possibilities that may come to life in the wake of a genome-wide DTC test. Precisely because the range of possible consequences of such tests is so open-ended and uncertain, personalized genomic data spills across social media, and into other domains.
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