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Concealment and discovery: The role of information security in biomedical data re-use

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 infrastruc...

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Detalles Bibliográficos
Autores principales: Tempini, Niccolò, Leonelli, Sabina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193209/
https://www.ncbi.nlm.nih.gov/pubmed/30322372
http://dx.doi.org/10.1177/0306312718804875
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author Tempini, Niccolò
Leonelli, Sabina
author_facet Tempini, Niccolò
Leonelli, Sabina
author_sort Tempini, Niccolò
collection PubMed
description 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.
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spelling pubmed-61932092018-10-24 Concealment and discovery: The role of information security in biomedical data re-use Tempini, Niccolò Leonelli, Sabina Soc Stud Sci Articles 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. SAGE Publications 2018-10-15 2018-10 /pmc/articles/PMC6193209/ /pubmed/30322372 http://dx.doi.org/10.1177/0306312718804875 Text en © The Author(s) 2018 http://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Articles
Tempini, Niccolò
Leonelli, Sabina
Concealment and discovery: The role of information security in biomedical data re-use
title Concealment and discovery: The role of information security in biomedical data re-use
title_full Concealment and discovery: The role of information security in biomedical data re-use
title_fullStr Concealment and discovery: The role of information security in biomedical data re-use
title_full_unstemmed Concealment and discovery: The role of information security in biomedical data re-use
title_short Concealment and discovery: The role of information security in biomedical data re-use
title_sort concealment and discovery: the role of information security in biomedical data re-use
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6193209/
https://www.ncbi.nlm.nih.gov/pubmed/30322372
http://dx.doi.org/10.1177/0306312718804875
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