Paper short abstract:

The paper explores how information security strategies and solutions affect the trajectories and directions of data journeys and data-intensive discovery, on the basis of the ethnographic study of two linkage infrastructures for biomedical and environmental data based in the UK.

Paper long abstract:

Whether data consigned to databases are accessible and useable depends partly on the strategies employed by database developers and curators to keep data alive as potential evidence and valuable commodities. As well-documented by STS scholars and Open Science advocates, those strategies are informed and constrained by many factors, ranging from financial and human resources to available materials, skills, expertise, policies, incentives and institutional locations. In this paper, we explore one crucial factor affecting the inclusion, accessibility and re-usability of data in databases, which has received little attention within STS so far: the management of information security strategies and policies, and its embedding in the material, social and regulatory landscapes of research. We show that security concerns and solutions exert a strong influence on the trajectories and outcomes of data sharing efforts, and the results can be at odds with the emphasis on exploratory research typical of open and big data science. To this aim, we build on an ethnographic study of two data linkage infrastructures in the biomedical research domain: the Secure Anonymised Information Link (SAIL), a databank based in Wales that aims to facilitate appropriate re-use of routine health data generated through public services and of otherwise unavailable datasets generated by scientific projects; and the Medical & Environmental Data Mash-up Infrastructure (MEDMI), which brings together researchers from the Universities of Exeter and Bristol, the London School of Hygiene & Tropical Medicine, the MET Office and Public Health England to link and analyse complex meteorological, environmental and epidemiological data.