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


Supplementary memorandum from the Association of British Insurers

  Further to the Science and Technology Committee's oral evidence session on 7 February in connection with the above inquiry. I thought it might be helpful to provide further information on some of the issues that arose.


  It seems that there may have been some misunderstanding about the scope of the ABI's Code of Practice on Genetic Testing. The code does make provision for insurers to use the results of a limited number of genetic tests that were identified in November 1998 by the ABI's genetics insurance adviser as having potential relevance for insurance purposes (see paragraph 33 of the Code). We have already sent you a list of these tests. Life companies have been free to use these tests, and in practice most have done so, but there have been very few applications on this basis.

  This provision is a transitional one. The code also commits insurers to abiding by the decisions of the Genetics and Insurance Committee (GAIC) on whether the test results are valid for insurance purposes. If GAIC concludes that a test result is not valid for insurers, under the Code insurers will have to stop using the test result and re-underwrite back to November 1998 any cases where people have been treated less favourably as a result of disclosing the results in question. The Code therefore allows insurers to continue to use the results of the tests identified by ABI's genetics adviser in 1998, where applications have been submitted to GAIC by the end of 2000, until GAIC's views are known.

  As we mentioned in our earlier memorandum to the Committee (paragraphs 8-9),[9] the ABI had not submitted applications to GAIC in respect of four tests out of the original list. These related to familial adenomatous polypois, multiple endocrine neoplasia, hereditary motor and sensory neuropathy and myotonic dystrophy.

  Although the tests for these conditions remained useful general indicators of increased morbidity or mortality, we were concerned that the results should only continue to be used where their relevance for insurers was clear. In the light of factors such as the average age of onset for each condition, its relationship with typical insurance buying age and insurers' experience of buying patterns, we were not sure that these tests really had enough practical value. At the time we submitted our memorandum, we were still waiting for GAIC's views on this approach.

  Having now received a response from GAIC, ABI has confirmed that it will not be submitting applications at this stage. Applications could be brought forward at a later date if changes in insurers' experience, customer behaviour or other developments (for example in science or technology) suggested that the practical value of these test results for insurance had changed.

  Further to its decision not to submit applications for these genetic tests, ABI has instructed its members to stop using the test results and to re-underwrite back to November 1998 any cases where people have been treated less favourably. We have already sent you a copy of our circular to members of 15 February 2001.[10]


  It has been suggested that people may be put off taking part in genetic research projects because they fear that insurers will use the results of any tests they undergo in that context in the underwriting process. This is not in fact the case. Insurers regard genetic research as crucial for developing new approaches to the prevention and treatment of serious conditions, and do not wish to discourage people from participating in such research. This statement is intended to clarify the position of ABI members.

  Insurers are only interested in the results of genetic tests where the results have been communicated to the individual as part of a clinical diagnostic process and then only if the test has been approved by GAIC (or is one of the tests submitted to GAIC by December 2000). Research projects rarely, if ever, produce test results that meet these criteria, and in these circumstances insurers would not be interested in any test results that the projects did produce.

  In addition, whatever the circumstances, insurers do not take account of genetic test results that are made available to policyholders after their policy has been taken out. If someone already has an insurance policy, it will not be affected by the policyholder participating in a research project concerned with genetic testing.

  ABI hopes that this statement of its members' position will reassure people who are asked to take part in genetic research, and encourage them to participate in taking forward this vital area of work.


  The ABI's applications to GAIC are listed on GAIC's website, at http://www/ Copies of applications can be obtained on request from the GAIC Secretariat.

  I hope this is helpful to the Committee. Please do get in touch if any further information would be of use.

5 March 2001

9   See p 52. Back

10   Not printed. Back

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