Patient secrecy rules 'preventing research'

The new rules are restricting the flow of vital information

Some of the leading figures in British medicine have told the BBC that the law that protects the confidentiality of patients' medical records is hampering research into cancer.

Experts say new rules introduced by the General Medical Council (GMC) may make it impossible for scientists to gain access to existing medical records and stored samples of human tissue.

They argue that an individual's right of confidentiality should not be allowed to overwhelm society's need for medical research that could come up with treatments and cures for fatal diseases.

I do not believe that these new rules will actually do anybody any good

Professor Sir Richard Peto

Doctors have always worked on the principle that consent is not needed to get access to medical records that do not affect the individual patients concerned and which are used for genuine research.

An investigation by Newsnight has found that confusion over the new rules is already restricting the flow of vital information to medical research institutions.

It found that at least 16 hospitals in Britain are known to have withheld research data from cancer registers, which record all deaths from the disease.

These include hospitals in Liverpool, Cambridge, Oxford, Birmingham, Cardiff and Leeds.

'Unnecessary deaths'

Cancer register staff persuaded nine of these hospitals to resume co-operation but seven are still withholding pathology lab results which will seriously compromise the tracking of major killers like breast and cervical cancers, Newsnight said.

Leading cancer expert Professor Sir Richard Peto said the current interpretation of the law prevents research into what treatments work and which have dangerous side effects.

"The new rules are going to prevent research that would recognise that treatments work," he said.

"It would prevent research that recognises dangerous side effects of treatments and it would prevent research that would recognise avoidable causes of diseases and death.

Clarification

"This will result in a lot of unnecessary deaths. I do not believe that these new rules will actually do anybody any good."

The government has been asked to allow medical researchers a special exemption from the Data Protection Act.

The GMC guidelines have been put on hold until 1 October when it is hoped government legislation will clarify the situation.

But many of the UK cancer registry teams fear that without clarity on the guidelines by then they will face another crisis in data collection with hospitals withholding crucial patient information.