Cancer experts call for action on GMC's confidentiality rules

Leading cancer epidemiologists are calling on the government and Department of Health to act urgently before the UK cancer registration programme collapses, saying a growing number of trusts are refusing to register patients for fear of flouting the new rules.

The GMC is accused of ignoring expert advice and failing to consult. At a cancer conference last week, the government's 'cancer tsar', Professor Mike Richards, said 'the guidance came out without prior warning - certainly for me'. He told delegates: 'The government is determined to secure the future of cancer registration and is currently taking legal advice on it.'

In the interim, trusts should go on collecting the data, but refrain from transmitting it, he said.

But Professor Michel Coleman, head of the cancer and public health unit at the London School of Hygiene and Tropical Medicine and deputy chief medical statistician at the Office for National Statistics, said the situation was already critical. Trusts in Liverpool, Glasgow, Cardiff and London are refusing to co-operate, he said. 'Six weeks into this crisis the system is collapsing around us and it may soon be irretrievable.'

Professor Julian Peto, head of epidemiology at the Institute of Cancer Research, described the GMC's actions as 'astonishingly stupid'.

The GMC says it is responding to the Data Protection and Human Rights acts and the ethical rights of patients.

Its guidelines say automatic transfer of personal information to a cancer or other registry, without patient consent, is 'unacceptable save in the most exceptional circumstances.

'These would be where a court has already decided that there is such an overwhelming public interest that patients' rights to confidentiality are overridden; or where you are willing and able to justify the disclosure, potentially before a court or to the GMC, on the same grounds'.

But Professor Coleman argues that 'there isn't the case law to support the GMC's interpretation of the Data Protection Act', and criticises the government and the DoH for failing to act.

A GMC spokesman said: 'How the cancer registry deals with the practical problems is for them, ' but provided there was a 'prompt' to doctors to ask for patient consent before information was disclosed, 'we don't think it will be a problem'.

Professor Coleman said this was 'risible'. 'The GMC has suggested that doctors ask for consent when giving the patient a diagnosis of cancer, ' he said. 'Most doctors will consider that inappropriate, and some patients will refuse anyway, resulting in unacceptable bias to the registry.'

Former chair of the UK Association of Cancer Registries Dr Tom Davies said it had warned the GMC at least four years ago of what could happen.