Select Committee on Science and Technology Appendices to the Minutes of Evidence


Memorandum submitted by the United Kingdom Association of Cancer Registries

  We write on behalf of the United Kingdom Association of Cancer Registries (UKACR) with some comments, specifically regarding the third bullet point in your letter ("the issues of cancer registration and its implications for data protection, given recent developments with the GMC and the Health and Social Care Act").

  In our evidence to the Commons Science and Technology Committee in June 2000, we drew attention to the problems cancer registries were experiencing with the issues of confidentiality and consent, especially since the implementation of the 1998 Data Protection Act. We argued the case for legislation to make cancer a statutorily notifiable disease as it is already in many other parts of the world. We were, therefore, very encouraged by the Science and Technology Committee's strong statement of support in "Cancer Research—A Fresh Look" (Recommendation dd) for a legislative solution for cancer registration and were hopeful that the recommendation would be taken forward.

  In late 2000, the situation worsened and the UK cancer registration scheme was put at risk by new guidance to doctors from the General Medical Council (GMC). The guidance stated that no identifiable information should be transferred to cancer registries without the patient's explicit consent. As a direct result, some NHS trusts and private hospitals stopped providing data to cancer registries. The GMC initially agreed to a period of grace for cancer registries until October 2001 allowing time for appropriate legislation to be passed or systems for seeking and recording consent to be put in place. Subsequently they substantially modified their advice and withdrew specific references to cancer registries.

  In May 2001, the Health and Social Care Act was passed by Parliament and this was welcomed by the UKACR as a solution to the ongoing problems. Section 60 of that act allows for regulations to be passed enabling transfers of identifiable data without consent for certain agreed purposes. Progress since the Act was passed has been frustratingly slow, with a lack of clear guidance from the Information Policy Unit at the Department of Health. We have on a number of occasions been given conflicting advice on how to proceed. We have been assured many times during the last six months that a regulation specifically covering cancer registration will be amongst the first submitted to Parliament and have provided several detailed statements justifying the need for a regulation. Until very recently we have seen little evidence of any progress towards developing a suitable regulation. Only in the last week have we been given to understand that a draft regulation covering "disease and other registers" will be considered at the first meeting of the Patient Information Advisory Group on 10 December 2001.

  We hope that this regulation will be supported by the Patient Information Advisory Group and passed by both houses of Parliament early in the new year but are not complacent about the future of the national cancer registration system. We remind members of the Science and Technology Committee of experience in other parts of Europe and beyond which clearly demonstrates the need for a robust legislative framework for cancer registration. Cancer registration is required by law in all or part of the USA, Canada, Australia, New Zealand, Israel, Finland, Denmark, Norway, Sweden and many other countries. In the Netherlands "the president of the official privacy court has acknowledged that (written) informed consent will make cancer registration impossible"[1]. Similarly in New Zealand, it was concluded that cancer registration with anonymised records is unworkable, given that records cannot be linked nor can potential clusters be investigated by mapping techniques—hence a legislative solution was adopted[2].

  We are, therefore, concerned about the apparent "transitional" nature of the proposed PIAG regulations. We shall, together with the NHS Information Authority, continue to explore technologies that can facilitate the use of anonymised or "pseudoanonymised" data within cancer registries. This is unlikely to reduce our requirement for identifiable data in the short term and we believe the loss of accuracy and completeness associated with such methods may always make them unacceptable solutions for cancer registration. Regulations proposed by PIAG are currently subject to annual review by Parliament. We believe such a frequent review interval may be inappropriate for the work we undertake and that an annual debate about the utility of the national cancer registration scheme would be counter productive.

  We continue to support a legislative framework, which would provide permanent protection for the national cancer registration system, as in other countries. We have the largest and most comprehensive national cancer registration system in the world. If protected by appropriate legislation, it will be able to continue to play a major role in monitoring the impact of the National Cancer Plan on cancer incidence and survival and the quality of cancer care and contributing to essential population-based cancer research.

Dr Monica Roche

Chair, United Kingdom Association of Cancer Registries

Professor David Forman

Vice Chair, United Kingdom Association of Cancer Registries (until November 2001)

Dr Hannes Botha

Vice Chair, United Kingdom Association of Cancer Registries (from December 2001)

6 December 2001

1   IACR Newsletter December 2000. News from Europe. Available on <au0,2><xu Back

2   Legislation pertaining to NZHIS. Available on <au0,2><xu Back

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