APPENDIX 18
Memorandum submitted by Breakthrough Breast
Cancer
Breakthrough remains convinced that the way
forward for cancer research in the UK is for the Government to
create an independent national organisation to develop a co-ordinated
programme of cancer control, including laboratory and clinical
research. Furthermore, Government funding for cancer research,
particularly into causes and prevention, needs to be significantly
increased beyond current levels.
Breakthrough therefore welcomes the establishment
of the new National Cancer Research Institute as a step in the
right direction. We look forward to playing our full part as a
member of the Institute.
The Institute is very much in its infancy and
it is therefore difficult at this stage to comment on how effective
it has been, or is likely to be. In general terms, Breakthrough
is encouraged by early indications—we are impressed, for
example, with the enthusiasm shown by the Institute's Director,
Liam O'Toole. However, it is at present unclear exactly what the
Institute is doing, what it will aim to achieve in future and
how it will measure its successes. Breakthrough believes it would
be helpful for the Institute to devise performance indicators
by which it would like its future progress to be assessed. In
addition, we suggest it would be helpful for the Committee to
review the Institute's progress a year from now.
Several stakeholders have previously expressed
concern about cancer registration and its implications for data
protection; Breakthrough shares those concerns. In particular
we are concerned that the need to gain permission to hold personal
data is having a negative impact on official cancer mortality
rates. There may be a case to be made for not extending the provisions
of the Data Protection Act to cancer registration, particularly
if the ability to conduct prevention studies is undermined.
Turning to the issue of Government funding of
cancer research, it is clear that there is scope to increase the
amount of cancer research funded directly by the Government. Charities
remain the largest funders of cancer research in this country.
The Government's stated commitment to matching voluntary sector
funding, whilst welcome, requires further clarification as there
are still questions about what constitutes or is defined by "cancer
research". It may be that a proportion of the money intended
for cancer research is in fact being swallowed up elsewhere.
On a related point, there is evidence that in
some cases hypothecated funding for cancer is not reaching the
intended recipients ie Cancer Networks. Breakthrough would welcome
assurances from Government that this will not be the case again
next year.
Delyth Morgan
Chief Executive
6 December 2001
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