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Using NHS Patient Data for Research Without Consent

Law, Innovation and Technology, Vol. 2, No. 2, pp. 219-258, December 2010

52 Pages Posted: 1 Feb 2011  

Ian Brown

University of Oxford - Oxford Internet Institute

Lindsey Brown

University of Bristol - School of Social and Community Medicine

Douwe Korff

Oxford Martin School - Global Cyber Capacity Centre; Eur. Univ. Viadrina - Centre for Internet & Human Rights; Yale University - Information Society Project; London Metropolitan University

Abstract

This article analyses the legality of the use of electronic patient records in the NHS for research without explicit patient consent under UK and EU law, with particular reference to the adequacy of the information provided to patients and the increasing difficulties of achieving de-identification. In section II, we describe the main NHS databases used for medical research purposes in England and the transparency of this use, and the general problem of re-identification. In section III, we examine the English common law position of confidentiality in relation to the use of medical records for research. Section IV sets out the European data protection standards on such use of that data. In section V, we summarise our findings and assessments and set out our conclusions and recommendations.

Keywords: Anonymisation, Privacy, Personally Identifiable Information

JEL Classification: I18, K3, O33

Suggested Citation

Brown, Ian and Brown, Lindsey and Korff, Douwe, Using NHS Patient Data for Research Without Consent. Law, Innovation and Technology, Vol. 2, No. 2, pp. 219-258, December 2010. Available at SSRN: https://ssrn.com/abstract=1753029

Ian Brown (Contact Author)

University of Oxford - Oxford Internet Institute ( email )

1 St. Giles
University of Oxford
Oxford, OX1 3JS
United Kingdom

HOME PAGE: http://www.oii.ox.ac.uk/people/?id=117

Lindsey Brown

University of Bristol - School of Social and Community Medicine ( email )

Senate House
Tyndall Avenue
Bristol
United Kingdom

Douwe Korff

Oxford Martin School - Global Cyber Capacity Centre ( email )

University of Oxford
34 Broad Street
Oxford, OX1 3BD
United Kingdom

Eur. Univ. Viadrina - Centre for Internet & Human Rights ( email )

Grosse Scharrnstr. 59
Frankfurt (Oder), 15230
Germany

Yale University - Information Society Project ( email )

P.O. Box 208206
New Haven, CT 06520-8206
United States

London Metropolitan University ( email )

London
United Kingdom

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