Balancing potential risks and benefits of using confidential data

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.

Credit: SARAH PERKINS

Balancing risks and benefits

It is essential to …