Balancing potential risks and benefits of using confidential data

doi:10.1136/bmj.333.7563.349

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Christina Davies, senior research fellow1,
Rory Collins, British Heart Foundation professor of medicine and epidemiology (secretary@ctsu.ox.ac.uk)1

¹ MRC/BHF/Cancer Research UK Clinical Trial Service Unit and Epidemiological Studies Unit, University of Oxford, Oxford OX3 7LF

Correspondence to: R Collins

Public health benefits arising from advances in medical research often rely on the use of personal data. How can we ensure that protecting patients' interests does not unduly hamper scientific study?

Confidential medical information is used in almost every type of clinical and public health research. Different research scenarios raise different practical, ethical, and legal issues, and with these come the challenges of balancing the potential risks associated with the use of personal data against the potential benefits that might be gained from the research. We consider a strategy for explicitly reviewing the balance of these potential risks and benefits when planning research.

Effect of current legislation

Changes in the laws on data protection1^–3 have had an important effect on training for medical research and on the design, costs, and feasibility of research projects. In many instances, this has improved the ways in which personal data are handled and protected the privacy of patients. There is, however, a general concern that varying interpretations of current legislation are stifling important research.4 Widespread uncertainty among professional bodies, hospital managers, ethics committees, clinicians, medical researchers, and the public may be producing disproportionate obstacles to the use of personal data when there is not genuine risk. In some instances, interpretations of legislation seem to have been driven less by careful consideration of the likelihood of real harm for individuals than by the desire to minimise the risk of criticism for organisations.

It needs just a few such decisions to impart an extra twist to the cycle of inefficiency in the use of public money for medical research. Clearly, research should conform to good practice, but it remains appropriate to consider whether over-interpretation of data protection legislation represents another real, albeit difficult to quantify, risk to the public.