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IJE Advance Access originally published online on February 26, 2008
International Journal of Epidemiology 2008 37(3):678-682; doi:10.1093/ije/dyn022
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Published by Oxford University Press on behalf of the International Epidemiological Association © The Author 2008; all rights reserved.

Epidemiological research labelled as a violation of privacy: the case of Estonia

Mati Rahu1,2,* and Martin McKee3

1Department of Epidemiology and Biostatistics, National Institute for Health Development, Hiiu 42, 11619 Tallinn, Estonia.
2Estonian Centre of Excellence in Behavioural and Health Sciences, Tartu-Tallinn, Estonia.
3European Centre on Health of Societies in Transition, London School of Hygiene and Tropical Medicine, Keppel Str, London WC1E 7HT, UK.

*Corresponding author. Department of Epidemiology and Biostatistics, National Institute for Health Development, Hiiu 42, 11619 Tallinm, Estonia. E-mail: mati.rahu{at}tai.ee


  Abstract

Since 1996, the Republic of Estonia has had data protection legislation that omits any of the exemptions for the processing of personal data for historical, statistical or scientific purposes provided by EU Directive 95/46/EC. This article describes the consequences of this legislation for public health monitoring and research. It assesses how the work of the Estonian Cancer Registry has been impaired, so that available data are now misleading, and examines the impediments that have been placed in the way of legitimate medical research. The article explains how this legislation came to be enacted and considers the reasons why this happened and why there is resistance to remedy the situation. It provides a cautionary tale about the overzealous implementation of data protection as it affects health surveillance and research.

Keywords Cancer registry, data protection, epidemiology, Estonia, law, medical registries, negative consequences, research

Accepted 16 January 2008


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