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


Memorandum submitted by Breakthrough Breast Cancer

  1.  Breakthrough Breast Cancer's vision is a future free from the fear of breast cancer. We aim to achieve this by research, and raising awareness. In partnership with the Institute of Cancer Research, Breakthrough established the first dedicated breast cancer research centre, based at the Institute of Cancer Research. We welcome the chance to submit a memorandum to the Science and Technology Committee at this late date. However, we are greatly concerned that we were not contacted by the Committee at the beginning of this enquiry and were only made aware of it inadvertently in discussions with staff of another charity. It is essential to have a comprehensive debate about the important issue of the use of a genetic testing in insurance. Since the Association of British Insurers have classified results of genetic tests for the breast cancer susceptibility genes, BRCA1 and BRCA2, as being suitable for insurance purposes, Breakthrough Breast Cancer has a special interest in deliberations on this topic. Our memorandum has two main themes: firstly general concerns about the use of genetic testing in insurance; secondly issues specific to BRACA1 and BRCA2.


  2.  Progress in the identification of human disease genes and improvements in technologies to routinely test for genetic alterations have accelerated at a remarkable rate in the last few years. While scientific progress has been rapid, clear analyses of the associated ethical and social questions have been much slower. The use of genetic tests for insurance purposes is one of the first major issues arising from scientific advances in the understanding of the human genome and has broad ethical and social implications. As such it is vitally important that these topics are dealt with in a comprehensive and considered manner.

  3.  The Science and Technology Committee should consider the issue of whether the use of genetic testing for insurance purposes is a form of unfair discrimination. This would be undesirable in itself and would also seem to be contradictory to the Government's desire to reduce social exclusion. Moreover, the European Convention on Human Rights and Biomedicine states, "any form of discrimination against a person on grounds of his or her genetic inheritance is prohibited".

  4.  There are concerns that the perceived threat of discrimination by insurance companies may hamper medical research. Individuals may be deterred from taking part in medical research in which a genetic test is performed, due to concerns about confidentiality of these results.

  5.  The use of genetic testing for insurance purposes is one of the first major ethical issues related to genetics to be dealt with by the Government. As such, decisions about genetics and insurance may impact on future decisions about the use of such tests in other areas, eg employment. The implications of potentially precedent-setting decisions need to be carefully debated.

  6.  The potential justification for such discrimination by the insurance industry is that it is necessary for financial stability, ie insurance would not be a viable without it. There is a theoretical possibility of adverse selection, in which people who knew (but did not disclose) that they were a higher risk could be motivated to buy extra insurance. However, the Human Genetics Advisory Commission concluded in its 1997 report that such adverse selection would likely be limited in scope and on balance could be withstood by the life insurance industry.

  7.  In principle, public opinion on these issues should be taken into account. At present public opinion is weighted against the use of genetic tests for insurance purposes. For example:

    —  The survey undertaken by the Human Genetics Commission at the end of 2000 found that the majority of people (76 per cent) believe that genetic information should not be used for setting insurance premiums.

    —  The British Social Attitudes survey of 1999 indicated that the majority of the public (75 per cent) believe that insurance companies should not be allowed to use genetic tests when determining insurance premium rates.

    —  The ABI held a citizen's jury in 1997 which concluded that insurers should only have access to genetic test results if they were negative, did not raise premiums and were tests for monogenic diseases.


  8.  Breakthrough Breast Cancer is specifically concerned about the potential use of presymptomatic testing for BRCA1 and BRCA2 mutations. At present only a small percentage (5-10 per cent) of breast cancers can be attributed to inheritance of mutant versions of these genes. There are specific technical questions related to testing for mutations in BRCA1 and BRCA2 which need to be addressed: (i) reliable estimates of the penetrance of these mutations in different sub-populations within the UK are required; (ii) because of the size of these genes and large number of different mutations/polymorphisms, it is often unclear whether specific mutations/polymorphisms predispose to breast cancer.

  9.  At present it is a very difficult decision for a woman to undergo genetic testing for alterations in the breast cancer susceptibility genes. Such women have to face a number of emotional and social issues. However, in some cases, genetic testing can have important medical consequences and may influence decisions to undertake preventative measures (such as prophylactic mastectomy or the use of drugs like tamoxifen for chemoprevention) or increase the level of surveillance. We are concerned that women who have had a positive genetic test, which shows a predisposition to breast cancer may be unduly influenced by economic incentives (such as being able to afford insurance) to undertake radical measures, such as prophylactic mastectomy.


  10.  Breakthrough Breast Cancer believes that there are broad social and ethical issues relating to the use of genetic testing and insurance, which need to be carefully considered. We welcome the current debate and look forward to being involved in any future deliberations.

5 February 2001

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