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Accepted Paper:
Alessia Costa (Wellcome Connecting Science) Richard Milne (University of Cambridge)
Paper short abstract:
This paper is concerned with ontology, multiplicity and bioinformation journeys. Specifically, it explores how alternative enactments of illness and health emerge, are stabilised and co-ordinated through bioinformation journeys across multiple domains of knowledge and practice.
Paper long abstract:
Recent years have seen growing interests in approaches such as behavioural biomarkers and digital phenotyping which seek to harness data generated from wearables and home sensors to develop novel and supposedly ‘ecological’ measures of disease. Through analysis of documentary evidence on the main companies and research initiatives in this area, and interviews with developers and data scientists in the public and private sector, in this paper we explore how alternative enactments of illness and health emerge, are stabilised and co-ordinated through bioinformation journeys across the multiple domains of knowledge and practice they traverse and shape.
Drawing on ethnographic sensibility to situated data practices, and emerging approaches within anthropology, sociology and STS, we explore what kind of bioinformation is produced and circulated, and what consequences this has. On one hand, we track how data is translated into biomarkers of neurological 'disease' for the purpose of biomedical research; on the other, we explore how it is fed back to users through consumer-oriented products aimed at supporting proactive engagement with brain 'health'.
We show how bioinformation contributes to reconfigure Alzheimer’s disease from a pathology of the brain to a disorder of the body-in-its-environment, but in doing so also reproduces a narrow view of the environment as mere backdrop to an individualised notion of risk. Further, we explore the digital promise of reconfiguring disease in terms of ‘personalised trajectory’, showing that the socio-technical processing of bioinformation in this context in fact reintroduces a biomedical model of ‘normal’ and ‘pathological’ that the tools supposedly challenge.
Plastic Data – bioinformation, coloniality and the promise of data futures
Session 1 Thursday 9 June, 2022, -