Concealment and Discovery: The Role of Information Security in Biomedical Data Re-Use
Dr Niccolò Tempini, Research Fellow in Data Science, Egenis Sociology, Philosophy and Anthropology, University of Exeter
Wednesday, 09 May 2018, 11am to 12.30pm
The Wellcome Centre for Ethics and Humanities, Big Data Institute, University of Oxford, Li Ka Shing Centre for Health Information and Discovery, Old Road Campus, Oxford OX3 7LF, Seminar room 0
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This paper analyses the role of information security (IS) in shaping the dissemination and re-use of biomedical data, as well as the embedding of such data in the material, social and regulatory landscapes of research. We consider the data management practices adopted by two UK-based data linkage infrastructures: the Secure Anonymised Information Linkage, a Welsh databank that facilitates appropriate re-use of health data derived from research and routine medical practice in the region; and the Medical and Environmental Data Mash-up Infrastructure, a project bringing together researchers from the University of Exeter, the London School of Hygiene and Tropical Medicine, the Met Office and Public Health England to link and analyse complex meteorological, environmental and epidemiological data. Through an in-depth analysis of how data are sourced, processed and analysed in these two cases, we show that IS takes two distinct forms: epistemic IS, focused on protecting the reliability and reusability of data as they move across platforms and research contexts; and infrastructural IS, concerned with protecting data from external attacks, mishandling and use disruption. These two dimensions are intertwined and mutually constitutive, and yet are often perceived by researchers as being in tension with each other. We discuss how such tensions emerge when the two dimensions of IS are operationalised in ways that put them at cross purpose with each other, thus exemplifying the vulnerability of data management strategies to broader governance and technological regimes. We also show that whenever biomedical researchers manage to overcome the conflict, the interplay between epistemic and infrastructural IS prompts critical questions concerning data sources, formats, metadata and potential uses, resulting in an improved understanding of the wider context of research and the development of relevant resources. This informs and significantly improves the re-usability of biomedical data, while encouraging exploratory analyses of secondary data sources.