Medical research suffers under data protection law

04/29/04

Editorial: Data protection, informed consent, and research BMJ Volume 328, pp 1029-30

Deaths will occur because of the effects of data protection law on British medical research, argue experts in this week's BMJ. Julian Peto and colleagues warn that the pointless obstacles that medical researchers face when they seek access to medical records are now causing serious damage.

They describe how the law hinders their work on cancer and suggest that the Data Protection Act and the Human Tissue Bill should be amended to allow access to data for non-commercial medical research without informed consent.

The Data Protection Act was intended to accommodate medical research. In practice, however, custodians of medical records are increasingly fearful of litigation, and the current government seems unlikely to grant the explicit exemption for non-commercial research that would resolve their fears, say the authors.

The Human Tissue Bill also threatens to hamper medical research unless crucial sections are clarified.

Lord Falconer has denied that the Data Protection Act prevents data from being passed to medical researchers. That those who enact and interpret radical social legislation should be so ignorant of its actual effects is alarming, they write.

Medical researchers have been allowed confidential access to medical records throughout the ages. Many lives and a great deal of public money would be saved if a high court judge concluded that the novel demand for informed consent has no basis either in law or in established common practice, they conclude.

Source: Eurekalert & others

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