Obstacles to conducting epidemiological research in the UK general population

doi:10.1136/bmj.329.7460.277

BMJ 2004;329:277-279 (31 July), doi:10.1136/bmj.329.7460.277

Education and debate

Academic medicine campaign

Obstacles to conducting epidemiological research in the UK general population

Hester J T Ward, consultant epidemiologist¹, Simon N Cousens, professor of epidemiology and medical statistics², Blaire Smith-Bathgate, nurse practitioner¹, Margaret Leitch, research nurse¹, Dawn Everington, statistician¹, Robert G Will, professor of clinical neurology¹, Peter G Smith, professor of tropical epidemiology²

¹ National Creutzfeldt-Jakob Disease Surveillance Unit, Edinburgh EH4 2XU, ² London School of Hygiene and Tropical Medicine, London WC1E 7HT

Correspondence to: H J T Ward h.ward@ed.ac.uk

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

The first 150 words of the full text of this article appear below.

Introduction

Case-control studies are a powerful epidemiological method foridentifying risk factors for disease. They are generally complexto design and execute. However, the difficulties of conductingsuch studies have been substantially increased by concerns aboutconfidentiality and access to medical records. These barrierscould be deleterious to the public's health. In this article,we report some of the problems we faced in conducting a nationalcase-control study of Creutzfeldt-Jakob disease.

Data protection in the United Kingdom

Advances in computer technology have given rise to fears aboutaccess to patients' records. The UK response was to supplementdoctors' common law duty of confidentiality to their patientswith the Data Protection Act 1998. Much debate has ensued aboutthe extent to which medical research could be impeded, includingissues surrounding informed consent, patient confidentiality,anonymisation, and access to data.^1
2 The subsequent updatingof guidance on confidentiality by various professional organisationshas produced inconsistencies, adding to the confusion about. . . [Full text of this article]

UK case-control study of Creutzfeldt-Jakob disease

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Research ethics committee approval

Recruiting controls

Effect of restrictions

Balancing costs to the individual with benefits to society

Alternative ethical approaches

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