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Obstacles to conducting epidemiological research in the UK general population

BMJ 2004; 329 doi: http://dx.doi.org/10.1136/bmj.329.7460.277 (Published 29 July 2004) Cite this as: BMJ 2004;329:277
  1. Hester J T Ward, consultant epidemiologist (h.ward@ed.ac.uk)1,
  2. Simon N Cousens, professor of epidemiology and medical statistics2,
  3. Blaire Smith-Bathgate, nurse practitioner1,
  4. Margaret Leitch, research nurse1,
  5. Dawn Everington, statistician1,
  6. Robert G Will, professor of clinical neurology1,
  7. Peter G Smith, professor of tropical epidemiology2
  1. 1 National Creutzfeldt-Jakob Disease Surveillance Unit, Edinburgh EH4 2XU
  2. 2 London School of Hygiene and Tropical Medicine, London WC1E 7HT
  1. Correspondence to: H J T Ward
  • Accepted 2 June 2004

Experiences from a national case-control study of Creutzfeldt-Jakob disease show the tensions between protecting individual patients' confidentiality and the access required for the benefit of public health

Introduction

Case-control studies are a powerful epidemiological method for identifying risk factors for disease. They are generally complex to design and execute. However, the difficulties of conducting such studies have been substantially increased by concerns about confidentiality and access to medical records. These barriers could be deleterious to the public's health. In this article, we report some of the problems we faced in conducting a national case-control study of Creutzfeldt-Jakob disease.

Data protection in the United Kingdom

Advances in computer technology have given rise to fears about access to patients' records. The UK response was to supplement doctors' common law duty of confidentiality to their patients with the Data Protection Act 1998. Much debate has ensued about the extent to which medical research could be impeded, including issues surrounding informed consent, patient confidentiality, anonymisation, and access to data.1 2 The subsequent updating of guidance on confidentiality by various professional organisations has produced inconsistencies, adding to the confusion about what constitutes ethically acceptable research.35 Fears have been expressed that epidemiological research will be severely hampered, and disease surveillance was severely threatened in England and Wales before the introduction of section 60 of the Health and Social Care Act 2001.6

UK case-control study of Creutzfeldt-Jakob disease

The National Creutzfeldt-Jakob Disease Surveillance Unit was conducting a national case-control study of all cases of sporadic Creutzfeldt-Jakob disease before variant Creutzfeldt-Jakob disease was identified in the United Kingdom in 1996.7 The study compared the exposure history of patients with Creutzfeldt-Jakob disease with that of controls recruited from inpatients at the same hospitals as the cases. We considered hospital controls suitable for comparison with cases for many potential risk factors. However, they were likely to be …

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