Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD

• Published in: Community genetics 2012-01, Vol.15 (5), p.243-253
• Main Authors: Murtagh, M.J., Demir, I., Jenkings, K.N., Wallace, S.E., Murtagh, B., Boniol, M., Bota, M., Laflamme, P., Boffetta, P., Ferretti, V., Burton, P.R.
• Format: Article
• Language: English
• Subjects: Biomedical Research; Computer Security - ethics; Computer Security - legislation & jurisprudence; Computer Security - standards; Confidentiality - ethics; Confidentiality - legislation & jurisprudence; Confidentiality - standards; Economics; Ethics Committees; Humans; Information Storage and Retrieval - methods; Life Sciences; Research Design; Santé publique et épidémiologie
• ISSN: 1662-4246; 1662-8063
• DOI: 10.1159/000336673

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.