Select Committee on Science and Technology Fifth Report


1.  The insurance industry has failed to give clear and straightforward information about its policy on the use of genetic test results to the public, and appears to be uncertain itself about what exactly its policy is. We call on all insurance companies to publish a clear statement detailing exactly which genetic tests results they will consider (both positive and negative), for which conditions and under which circumstances, as soon as possible. (Paragraph 29)

2.  We acknowledge insurers' concerns about the risk of adverse selection and accept, as a principle, that commercial insurance companies should have access to the same information as applicants, where it is relevant and reliable - but only if there are no adverse consequences for society as a whole (for example, by discouraging people from taking tests). (Paragraph 31)

3.  It does not appear to be certain, at present, that the information obtained from positive genetic tests is relevant to the insurance industry. (Paragraph 32)

4.  The ABI's decision that four of the tests it recommended insurers use three years ago are now no longer relevant or reliable casts the gravest possible doubts on the validity of all the tests not explicitly approved by the GAIC, being currently used by insurers. Insurers have given the test results a predictive significance that cannot, at present, be justified. (Paragraph 33)

5.  Insurers appear to have been far more interested in establishing their future right to use genetic test results in assessing premiums, than in whether or not they are reliable or relevant. (Paragraph 34)

6.  If the insurance industry wishes to reassure the public that they are acting in a reasonable manner, they must publish more data which unequivocally supports the changes made to insurance premiums based on positive genetic test results. (Paragraph 36)

7.  We recommend that insurers should publish clear explanations as to exactly how such factors as early diagnosis and treatment are factored into their actuarial calculations. (Paragraph 37)

8.  We suggest that at present the very small number of cases involving genetic test results could allow insurers to ignore all genetic test results with relative impunity, allowing time to establish firmly their scientific and actuarial relevance. (Paragraph 38)

9.  The view of the ABI and some insurers, that ignoring genetic test results would be too costly, is contradicted by the actions of at least three insurance companies who have decided to ignore tests for the short-term and do not seem to regard it as an act of commercial suicide. (Paragraph 39)

10.  We welcome the policy of companies who take account only of negative test results in the calculation of premiums. The scientific and actuarial evidence currently available seems to indicate that this is the only justifiable use that can currently be made of genetic test results. We strongly recommend that the ABI and other insurers consider this when reviewing their policies. (Paragraph 40)

11.  We recommend that insurers explain publicly how they use family history information in the assessment of insurance premiums, and publish the supporting data. (Paragraph 41)

12.  If the use of tests by insurers is to be allowed, adequate research must be carried out to discern the impact of the use of genetic test results by insurance companies on the likelihood of patients seeking clinical advice. This research must be independent and have the confidence of all those involved but, as it is the insurers who wish to use the tests to protect their own interests, they should provide the funding. (Paragraph 45)

13.  The distinction between genetic tests carried out for purely research purposes and for diagnostic purposes must be clearly understood by all those who seek to use the results. (Paragraph 47)

14.  The statement by insurers and the ABI that they will never use results from genetic tests carried out for research purposes is extremely welcome. We recommend that this principle be incorporated into the ABI Code of Practice without delay. (Paragraph 48)

15.  The Government and the insurance industry must collaborate to provide an alternative form of insurance for those who would be denied it because of their genetic make-up. Alternative insurance arrangements may help to calm public fears about the risk of a genetic underclass. (Paragraph 52)

16.  We believe that it is an unacceptable conflict of interests for a geneticist nominated by the ABI to judge his own test application, as a member of the GAIC. (Paragraph 56)

17.  We recommend that the membership of the GAIC should be throughly reconsidered if it is to inspire public confidence in its decisions. (Paragraph 57)

18.  We recommend that the reformed GAIC re-examine the decision to approve the use of the Huntington's Chorea genetic test for use by insurers, with extensive peer review both for the data supplied by insurers and its own decisions, prior to publication. (Paragraph 58)

19.  The GAIC should be given the ability to approve the use of negative test results alone for use by insurers, without allowing the use of positive results. (Paragraph 59)

20.  We recommend that some mechanism be established to facilitate applications for the approval of tests by the GAIC, from bodies other than insurers. (Paragraph 59)

21.  It is imperative that the GAIC be properly resourced for the work it is doing. (Paragraph 60)

22.   The previous unwillingness of Government to become involved in this area has contributed to the atmosphere of confusion and ignorance that pervades the use of genetic test results. (Paragraph 62)

23.  There must be doubts whether the ABI, a trade organisation funded by insurers to represent their own interests, is the right body to regulate the use of genetic test results. (Paragraph 64)

24.  The ABI must act as a matter of urgency to convince the Government and the public that the Code of Practice is being complied with. (Paragraph 65)

25.  Insurers must prove that they are capable of regulating themselves effectively and thoroughly, with sanctions in place to ensure compliance. The ABI's Code of Practice is a welcome step in the right direction by insurers but it is inadequate in its present form. The reformed GAIC should make recommendations to the ABI for its Code of Practice. The GAIC should also closely monitor insurers' compliance with the Code. (Paragraph 66)

26.  Insurance companies were wrong to use the results of genetic tests in assessing risk before they had been approved by the GAIC. We recommend that all insurance companies should immediately cease to use the positive results from any genetic test that has not been explicitly approved by the GAIC. (Paragraph 67)

27.  The insurance industry would certainly benefit from concentrating efforts on building public confidence in its actions and motives, rather than giving itself the right to extend its ability to load premiums. (Paragraph 68)

28.  We do not believe that legislation denying insurers access to all genetic test results would be appropriate. (Paragraph 70)

29.  The best way forward for the Government and industry would be a voluntary moratorium on the use of all positive genetic test results by insurers for at least the next two years. During this time more research should be done to establish the actuarial and scientific relevance of genetic test results to the assessment of premiums, and the possible consequences for research and healthcare. If the insurers are unable, or unwilling, to regulate themselves and enforce this moratorium, we recommend that Government enforce its will by legislation. We further recommend that insurers should still consider negative test results in assessing insurance applications throughout any moratorium. (Paragraph 71)

30.  It would be better for the insurance industry to act responsibly now, rather then be forced into a commercially compromised position in the future. (Paragraph 72)

31.   We strongly recommend that the HGC should continue to monitor the use of genetic test results by insurers and the consequences of their actions, in their widest possible context, and advise Government on further developments as they arise and in a timely manner. (Paragraph 73)

32.  The HGC's programme and, in particular its efforts to involve as many of the public as possible in its consultations, should not be undermined by a lack of resources. The Government should, as a matter of urgency, review the funding and resources the HGC is allocated. If the HGC is to receive extra work as a result of our recommendations, this should also be reflected in its budget. (Paragraph 74)

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