Securing the data economy: translating privacy and enacting security in the development of DataSHIELD

M. J. Murtagh*, I. Demir, K. N. Jenkings, S. E. Wallace, B. Murtagh, M. Boniol, M. Bota, P. Laflamme, P. Boffetta, V. Ferretti, P. R. Burton

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

14 Citations (Scopus)

Abstract

Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new 'economy' provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers' everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the 'success' of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology. Copyright (C) 2012 S. Karger AG, Basel

Original languageEnglish
Pages (from-to)243-253
Number of pages11
JournalPublic health genomics
Volume15
Issue number5
DOIs
Publication statusPublished - 2012

Bibliographical note

Copyright © 2012 S. Karger AG, Basel.

Keywords

  • Biomedical Research
  • Computer Security
  • Confidentiality
  • Ethics Committees
  • Humans
  • Information Storage and Retrieval
  • Research
  • Research Design
  • Data economy
  • DataSHIELD
  • Privacy
  • Transdisciplinary
  • Video ethnography
  • INDIVIDUAL-LEVEL
  • BIOBANKING
  • TRAITS

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