Sharing patient records would be ‘ethical but illegal’

Identifiable patient records will be disclosed in the name of medical research if new guidelines on patient confidentiality are passed under an ethics review by the General Medical Council in July. And the new policy seems to be in contravention of EU law, raising the possibility that sharing patients' records for research will become "ethical but illegal".

The GMC held a formal consultation between September and November 2008 in order to update its patient confidentiality guidance for doctors in response, among other issues, to concern that the old guidelines were a barrier to effective medical research.

The panel that proposed the new guidelines included Sir Mark Walport, director of medical research charity the Wellcome Trust. The group decided doctors should be allowed to make identifiable patient records available to researchers, provided it can be "justified in the public interest" and that tracking down patients to ask permission would require "unreasonable effort".

Such guidance appears to run contrary to EU privacy laws. According to data security expert Professor Ross Anderson, EU law gives patients "a right to forbid their doctor to give their medical data to anyone who isn't involved in their case". From mid-September, when the new GMC guidelines are expected to be formalised, releasing named patient data will be "ethical but illegal", he says.

Such concerns might seem almost trivial when set against the possibility of scientific advances in the fight against cancer, for example. But medical histories can be valuable.

As public policy writer John Elledge points out on The First Post, everyone from potential employers to mortgage lenders would pay a lot of money to check whether you have a chronic condition or a family history of sudden death. "Many would pay enough money, in fact, for safeguards like the Data Protection Act to seem nothing more than a mild inconvenience," he writes. ·