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Statement by the U.K. Association of Cancer Registries (UKACR) on the General Medical Council (GMC) Guidance on Confidentiality.

BMJ 2000; 321 doi: http://dx.doi.org/10.1136/bmj.321.7265.854/d (Published 07 October 2000) Cite this as: BMJ 2000;321:854

2 October 2000

1. The UKACR views with considerable concern the Guidance on Confidentiality recently issued to all doctors by the GMC. Paragraph 27 of the Guidance states:

“The automatic transfer of personal information to a registry, whether by electronic or other means, before informing the patient that the information will be passed on, is unacceptable save in the most exceptional circumstances.”

2. Supply of information on cancer patients to the relevant regional cancer registry has been a mandatory requirement within the NHS since 1 July 1993. Cancer registries are registered under the Data Protection Act. They operate stringent data security and confidentiality policies. They have an unblemished record on security. Their production of public health information for government and the public is unrivalled. Their use for research into the causes, diagnosis, treatment and outcome of cancer has been extraordinarily productive: the research has an international reputation.

3. The recently published House of Commons Science and Technology Committee Report on Cancer Research states (paras 96 & 97): (http://www.publications.parliament.uk/pa/cm199900/cmselect/cmsctech/332/33202.htm)

“In order to evaluate progress in the prevention and treatment of cancer, it is vital to know the number of people who develop the different forms of the disease each year (incidence) and their survival rates …. Cancer registries provide this information. Registries collect data for all cancer patients in a defined population, and they provide a detailed and evolving picture of the public health burden of cancer. The UK has been covered since 1962 …. It is the largest national cancer registration system in the world”

4. Currently information about cancer patients is passed from NHS Trusts and General Practitioners to NHS Cancer Registries on the basis of implied consent in line with current Department of Health guidance. This information is not anonymous because personal identifiers are required to cross-check data obtained from different sources, an essential component of quality control, and for the linkage of registrations with death certificates to estimate survival. The acquisition of registry data in this manner has not led to any confidentiality concerns. Routine information output from registries is always based on aggregated anonymised data. On some occasions, usually for research and clinical audit purposes, identifiable data are required from registries. Appropriate consent and ethics committee approval is always obtained in such situations.

5. The effect of the GMC guidance will be to require explicit consent from every person with newly diagnosed cancer (over 280000 per year in the U.K.) before information about them can be passed to cancer registries. It has been shown from experience in Germany and elsewhere that this would be logistically unmanageable and unworkable in practice. It would in effect destroy the population-based coverage of cancer registries. The hypothetical additional safeguards introduced by explicit consent are likely to be negligible in comparison with the potential loss to the whole community and to future cancer patients if this population basis becomes compromised. It is also likely that the process of seeking consent at a particularly stressful time may jeopardise the relationship between the cancer patient and those providing care.

6. The NHS Cancer Plan, published on September 27th 2000 (http://www.doh.gov.uk/cancer/cancerplan.htm) states (para 6.25):

“… public health benefits depend on the completeness of cancer registration in the population. The government is determined to secure the future of cancer registration and will take the necessary action to do this”

7. The UKACR is in agreement with the House of Commons Select Committee that the Government should, as a priority, introduce legislation to make cancer registration a legal requirement in order to provide explicit clarification on this issue. However legislation takes time and it would be a national medical disaster if, in the interim, cancer registration were to cease. This is, however, a likely consequence of the GMC guidance.

8. The UKACR calls upon the Government to make good its pledge in the NHS Cancer Plan and indicate:

a, how it intends to secure the future of cancer registration

b, how it intends to respond to the Select Committee recommendation on legislation

c, what advice it gives to cancer registries and their data suppliers in the light of the GMC guidance.

For further information please contact:

Dr Monica Roche

Chair UKACR

01865 227040

or

Professor David Forman

Vice Chair UKACR

0113 392 4309