Report on the use of personal medical data in health research 29/11/02. By the Public Health Genetics Unit A new Nuffield Trust report looks at the background, law and ethical issues of the use of personal medical data in health research.

In recent years, concern has grown about how individual privacy may be protected when medical information is used for research or health surveillance, and how the ideal of privacy can be reconciled with the value, to the whole of society, of knowledge gained from these activities.

As concern has grown, so has confusion, with a plethora of legislation and guidance on the use of personal data in general, and health data in particular.

In a report for the Nuffield Trust, William Lowrance seeks to explain the background, clarify the law, identify the relevant ethical issues and chart a way forward. The report, 'Learning from Experience: Privacy and the Secondary Use of Data in Health Research' is based on an extensive literature survey, interviews with experts and practitioners in a variety of fields, and a series of workshops to explore key issues.

The report describes the range of secondary uses for medical data, and the new technological advances that have increased the power with which such data may be stored, linked and retrieved. The relevant UK legislation (in particular, the Data Protection Act and Section 60 of the Health and Social Care Act) is explained and areas of continuing uncertainty are highlighted. Particular attention is paid to the meaning and practicality of different forms of consent for the use of data, and different options for full, partial or reversible anonymisation.

The author advocates a common-sense approach, based on a clear respect for individual privacy and involving transparent systems for protecting it wherever possible, but recognising that society's interest is not served by making medical research prohibitively difficult or expensive. Therefore, a less rigid approach may be needed to the concept of 'consent', perhaps accompanied by clearer exemptions for activities such as public health surveillance that are deemed to be essential to the public interest. Anonymisation should be the norm wherever possible. Finally, it is vital to rebuild and maintain public trust.

Article courtesy of the Public Health Genetics Unit .

Image credit: Oliver Burston