Consent, confidentiality, and the Data Protection Act

doi:10.1136/bmj.332.7534.165

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Amy Iversen (A.Iversen@iop.kcl.ac.uk), clinical lecturer,
Kathleen Liddell, lecturer in law,
Nicola Fear, senior lecturer,
Matthew Hotopf, professor of general hospital psychiatry,
Simon Wessely, professor of epidemiological and liaison psychiatry

King's Centre for Military Health Research, King's College London, Institute of Psychiatry, London
Faculty of Law, University of Cambridge and Cambridge Genetics Knowledge Park, Cambridge
Academic Centre for Defence Mental Health, King's College London

Correspondence to: A Iversen, Department of Psychological Medicine, Weston Education Centre, London SE5 9RJ

Accepted 23 November 2005

Overly strict interpretation of the law is hampering epidemiological research. Here, one research team shows why regulators and organisations holding data should adjust their approach

The United Kingdom's Data Protection Act 1998 has had a substantial impact on health research, although that was not its primary purpose. It is a wide ranging piece of legislation that safeguards individuals' fundamental right to privacy when personal data are processed.1 The act supplements the common law of confidentiality developed through judicial decisions. The medical and academic community is concerned that current interpretation of the law is changing the face of medical research.2 We use our experiences in studying UK military personnel to present empirical data in support of a more balanced interpretation of the act.

Data Protection Act and the law of confidentiality

Although some medical researchers blame the law for increasing the bureaucratic barriers to research,3 others, including the Information Commissioner and the Lord Chancellor, dispute this.4 The Lord Chancellor stated in the House of Lords:

At present the 1998 Act allows medical data to be used for any medical research purpose without the need for consent of individuals. It is not necessary to define the term “medical research” nor to make specific provision for it to include the monitoring of public health, which for these purposes is regarded as medical research.4

Current difficulties seem to stem from interpretations of the law that fail to appreciate the methods of epidemiology and the relatively minor privacy interferences that most epidemiological research entails.

Currently most codes of conduct recommend informed consent for any medical research, whether it involves direct contact with participants or access to their records. But as a matter of law, this is not an absolute rule. Both the law of confidentiality and the Data Protection Act envisage circumstances in which personal health information may …