GMC buys extra time in row over cancer registry privacy

Earlier this month, HSJ revealed that clinicians fear the GMC's own rules on confidentiality could see the collapse of the registry, damage the national cancer plan and threaten all aspects of medical research.

Trusts have refused to register patients for fear of flouting the new rules. But now the GMC says that in order to safeguard the work of the cancer registries, there should be a transitional period until October 2001 when it will take into account the 'temporary, exceptional' circumstances which may prevent doctors from following its guidance when releasing information to cancer registries.

The GMC guidance to doctors says that they should seek oral or written consent from patients when submitting data to the registries, in line with its ethical policy on patient privacy and the requirements of the Data Protection Act 1998, the Human Rights Act 1998 and common law.

But leading cancer specialists say that the GMC concession is not enough. Dr Judith Youngson, associate director of the Roy Castle International Centre for Lung Cancer Research, said that urgent steps were needed to add a statutory instrument to exempt medical research from the Data Protection Act.

'All across the country, major population-based, epidemiological research studies that have taken years to set up are grinding to a halt, ' said Dr Youngson.

'The government recognises the importance of such research but at the same time is making it impossible to carry out the work.

'Clear direction must also be given with regard to the common law on confidentiality and the GMC guidelines, otherwise there will be more conflicting rulings as at present.

'Most clinicians in a busy clinic will not obtain that consent and have said so. Approaching people with cancer to take part in a research project is difficult enough without these insurmountable barriers.'

Dr Youngson said her own research study, which was trying to recruit 1,500 patients for one of the biggest lung cancer studies carried out in the UK, had now been put on hold because of concerns about the GMC guidance.

She said it could have major implications for medical research across the board.

However, assistant data protection registrar Ian Bourne said he did not believe that doctors' criticism was well-founded. 'I'm not sure that these arguments are entirely convincing. There is no obvious reason why doctors should not be able to get oral or written consent from the patient.

'The cancer registries are a very efficient means of collecting data and I think there could be some innate conservatism on the part of doctors to changing the methods of collection. Times have moved on and we need to protect the confidentiality of individuals.'

He added that cancer registries may have to consider changing the type of information they collect and he questioned whether they needed to have identifiable patient details such as names and addresses.

At a recent cancer conference, 'cancer czar' Professor Mike Richards said the government was determined to secure the future of cancer registration and was taking legal advice on the position. In the meantime, trusts should continue to collect the data but not transmit it to the registries.

The Imperial Cancer Research Fund this week called on the government to match charity investment in cancer research or see the UK lag behind in cancer treatment, cures and prevention.