Abstract
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 material, social and regulatory landscapes of research. We consider 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 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 operationalized 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 reusability of biomedical data, while encouraging exploratory analyses of secondary data sources.
Highlights
This paper analyses the role of information security (IS) in shaping the dissemination and reuse of biomedical data, as well as the embedding of such data in material, social and regulatory landscapes of research
Security requirements and information governance in particular exert a strong influence on the trajectories and outcomes of data sharing efforts, in ways that researchers often perceive to be at odds with the emphasis on exploratory research typically invoked by advocates of ‘open’ and ‘big data’ science (e.g. Hey et al, 2009; Mishra et al, 2015; National Research Council, 2009; Sansone et al, 2012)
We argue that evidence in scientific investigations (EIS) and illicit uses (IIS) are not necessarily in conflict with each other: The tensions between these two forms of IS derive from the ways in which researchers and the institutional settings within which they work tackle the division of scientific labour, often rendering data management strategies vulnerable to technical innovations, public controversies or regulatory shifts
Summary
This paper analyses the role of information security (IS) in shaping the dissemination and reuse of biomedical data, as well as the embedding of such data in material, social and regulatory landscapes of research.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
