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


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?


  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.


  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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