APPENDIX 4
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>http://www-dep.iarc.fr/iacr<xu Back
2
Legislation pertaining to NZHIS. Available on <au0,2>http://www.nzhis.govt.nz/Service-guide.html<xu Back
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