APPENDIX 4
Memorandum submitted by the Cancer Research
Campaign
The Cancer Research Campaign (CRC) is a national
medical research charity established in 1923. Its mission is the
eradication of cancer. It is responsible for the support of the
majority of cancer research undertaken in UK universities and
medical schools as well as in four specialist cancer research
institutes. Campaign funded scientists and clinicians have contributed
to a number of significant "advances" in understanding
the biology of cancer, its detection and its treatment.
The CRC's current annual spend on research is
£61 million set to rise to £78 million over the next
three years. Funding is provided in the form of grants ranging
from £10,000 to £5 million per annum and in duration
from one to six years.
The Campaign raises all its money from its volunteers
and supporters. It receives no Government funding directly, but
all Campaign grants to universities are matched by an infrastructure
component provided by Government.
(i) What do you feel to be the main
benefits and disadvantages of insurance companies using genetic
test results in assessing policies?
Benefits
There are two benefits associated with the use
of genetic testing by insurance companies. The first is to the
insurance company. An abnormal result to a genetic test will enable
the insurance company to charge an higher premium as the individual
will have an increased risk of developing a known disease. The
second benefit is to an individual who has received a normal result
from a genetic test. In this case the individual will be charged
a low premium, even though there may be a family history of disease,
due to the reduced risk associated with a normal result.
Disadvantages
The general public concern about the use of
genetic test results in assessing insurance policies may deter
individuals from obtaining medical advice or from partaking in
medical research. There is a possibility that an individual's
health may suffer due to a reluctance to obtain genetic testing
because of the associated effect on insurance premiums. There
is a need for more clarity, education and information concerning
these issues.
(ii) How effective do you feel the
current regulatory system is?
The current regulatory system appears to be
effective because the ABI has collaborated with GAIC. There seems
to be no evidence that the system is being abused. Which leads
one to the conclusion that within its terms of reference it is
effective. However, the current terms of reference of GAIC are
very narrow and focus entirely on the use of DNA testing. There
is no regulation of the use of family history in assessing applications
for policies.
In a situation where a DNA test is available
it is important that insurance companies demonstrate that they
are using all the relevant information in making assessments.
For example if a woman carries a BRCA 1 mutation but has had a
double mastectomy this information should be factored into assessing
her for life insurance, since it is relevant to her longevity
and to her future health prospects. We would not wish insurance
companies to recommend radical surgery to reduce risk but if it
has already happened it should be factored into the assessment.
In summary the current debate is much too narrow
and focused on DNA test results. It needs to broaden out and make
full use of all relevant information.
(iii) Do you feel the use of genetic
test results could have an effect on medical research and progress
in your area?
Yes. The public are already concerned about
the use of genetics and the increasing publicity about the use
of genetic information. The public may see the involvement in
medical research as being a route for their genetic information
to become publicly available. The thought that insurance companies
may be able to use this genetic information when calculating insurance
premiums may deter the public's involvement in extremely valuable
medical research.
22 January 2001
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