Select Committee on Science and Technology Fifth Report

The regulatory and advisory framework

12. The regulatory and advisory framework has also changed significantly since the 1995 Report and the work of three bodies in particular have been relevant to this inquiry.


13. The HGAC was operational from December 1996 to December 1999.[22] It had a membership of both expert and lay members, with a secretariat drawn from the Office of Science Technology. Its terms of reference were: to review scientific progress in human genetics; to report on issues arising from developments that could have wider social, ethical and/or economic consequences; and to advise on methods to build public confidence in, and understanding of, genetics. Its first report, The Implications of Genetic Testing for Insurance, was published in March 1997 and dealt with many of the issues raised by our predecessor Committee.[23] It recommended that, owing to the lack of quantifiable evidence on the subject, the industry should introduce a two year moratorium on requiring disclosure of genetic tests.[24] It also urged the Government to "establish a mechanism to evaluate the scientific and actuarial evidence presented in support of the specific genetic tests or insurance products."[25] In its memorandum, the Government has informed us that the latter recommendation was carefully considered and explored with the ABI, but that the insurers were "not prepared to accept this".[26] The ABI made several concessions on the use of tests by the industry, however, and had recently published its own Genetics Code of Practice.[27] The Government therefore decided not to impose a moratorium by means of legislation.

14. In his oral evidence, Professor Martin Bobrow stated that the HGAC, of which he was a member, lacked the resources necessary to carry out its function properly.[28] This led us to ask for written evidence on the resources available to the two bodies currently advising Government on this subject: the GAIC and the HGC.[29] The alarming replies from these two bodies are dealt with below in paragraphs 55 and 69 respectively.


15. In response to the HGAC's recommendation that there should be "an effective mechanism evaluate the reliability and actuarial evidence relating to specific genetic test results ...[which] should involve people with sufficient expertise and independence to meet concerns about interpretations of... results", the Government set up the GAIC in April 1999.[30] Its role is not only to evaluate genetic tests; it is also responsible for reporting to Government on the subsequent level of compliance by the industry with its recommendations.[31] In June 2000, after extensive consideration and consultation, the GAIC published its criteria for tests to be approved, with an application form of 11 questions that all those seeking verification of tests would have to complete.[32] The GAIC deems a test to be suitable for use in assessing insurance proposals if it meets three conditions:

  (i)  Technical relevance - Is the test technically reliable? Does it accurately detect the specific changes sought for the named condition?

  (ii)  Clinical relevance - Does a positive result in the test have any implications for the health of the individual?

  (iii)  Actuarial relevance - Do the health implications make any difference to the likelihood of a claim under the proposed insurance product?

It is the responsibility of the insurers who wish to use a particular test (usually through the ABI) to make the formal application to the GAIC, by means of the application form, supported by relevant scientific and actuarial data.

16. In October 2000, the GAIC announced that the reliability and relevance of the genetic test for Huntington's Chorea was sufficient for insurance companies to use the results. In its memorandum to us, the GAIC stated that it expected to assess the tests for two more conditions in the next six to nine months: early onset familial Alzheimer's disease and hereditary breast/ovarian cancer.[33]


17. The HGC was established by the Government in May 1999 and began operating in December of that year.[34] It took over the roles of three previous advisory committees: the HGAC; the Advisory Committee on Genetic Testing (ACGT); and the Advisory Group on Scientific Advances in Genetics (AGSAG). The HGC is one of three "strategic" scientific advisory bodies, which have a policy evaluation, as well as an advisory, role and were set up by the Government to look at the "big picture" on certain key areas, taking ethical and social issues into account, in addition to the science.[35] The membership of these three bodies includes people from a wide range of backgrounds, such as journalists and representatives of consumer interest groups, as well as scientists.[36]

18. In December 2000, the HGC published a public consultation document, Whose hands on your genes,[37] and it is currently collecting information and opinions on a number of topics arising from genetic science. At the specific request of ministers, the HGC has included the wider social and ethical issues involved in the use of genetic data by insurers in its consultations. It held an information-gathering day on 9th February 2001 in London on this issue, where presentations from all sides of the argument were heard, and an informal discussion took place involving members of the public.[38]

Current insurance practice


19. We were unable to find out from the ABI exactly when insurers started requesting the results of genetic tests from insurance applicants. Diagnostic tests for certain conditions, notably Huntington's Chorea, began to be used on a more widespread research and clinical basis after 1990. It is likely that after this time, although not asked for results explicitly, insurers would have considered any results that were declared as part of normal medical records when assessing premiums. The first formal recognition by the industry that tests were being used came from the ABI. During 1996 and 1997, partly as a result of our predecessor Committee's Report, the ABI consulted its members on the use of genetic test results and produced a statement in February 1997, which the Committee reported on.[39] This statement developed into the ABI's first Genetic Testing Code of Practice, which was published in December 1997 and was revised in August 1999.[40] We are told by the ABI that it will be looked at again later this year.[41]

20. The Code of Practice established three basic principles for insurers with regard to the use of genetic tests:

  • insurers should not require applicants to undergo a genetic test to obtain insurance;

  • insurers may require disclosure of existing test results under certain circumstances;

  • applicants for life assurance up to £100,000 linked to a mortgage will not be asked for test results.

The Code tackles several other important issues: it requires each company to appoint a Nominated Genetics Underwriter, with sufficient experience and seniority, who will be responsible for all underwriting decisions involving genetic tests[42]; it lays down security and confidentiality guidelines for the handling of genetic data[43]; requires insurers to "keep themselves informed of wider developments in genetics"[44]; and requires each company's Chief Executive Officer to certify their compliance with its conditions annually.[45] It also established an independent tribunal system for customers to appeal against underwriting decisions. They may apply to the ABI to have their case heard, free of charge, by a tribunal consisting of a "legally qualified chairman", an "insurance industry professional" and a "genetic science professional".[46]

21. The ABI was a founder member of the UK Forum for Genetics and Insurance (UKFGI). This organisation was set up on the initiative of the Institute of Actuaries in November 1999, after the publication of the HGAC's report on genetics and insurance the previous year. The UKFGI seeks to "analyse the implications of advances in genetic knowledge for insurance in all its forms and to serve the public interest by reporting on its it findings.".[47] Other founder members include the British Society for Human Genetics (BSHG), the Genetics Interest Group (GIG), the Royal Society and the Wellcome Trust.


22. In November 1998, separately from the Code of Practice, the ABI issued a list of ten tests for seven conditions, which they recommended as sufficiently reliable to be used by the insurance industry. It acted under the advice of its Genetics Adviser, Professor J.A. Raeburn, Professor of Clinical Genetics at the University of Nottingham.[48] The list of ten tests for seven conditions are shown in the table below.

23. While there has been much discussion about these 'ten tests for seven conditions' we were extremely surprised that the list of the tests and conditions was apparently never published in any widely available form, for example as an appendix to the ABI Genetic Testing Code of Practice. The only place the ABI appears to have put them into the public domain was on a very poorly advertised and difficult to access website.[49]

Figure 1: List of conditions and genetic tests recommended by the ABI as relevant for insurance purposes


Genes tested for(s)

Huntington's chorea


Early onset familial Alzheimer's Disease

APP, PS1 and PS2

Hereditary breast and ovarian cancer


Myotonic dystrophy


Familial adenomatous polyposis


Multiple endocrine neoplasia


Hereditary motor and sensory neuropathy


24. The Code of Practice requires all ABI members to agree that if the GAIC decides a test is not relevant the customers affected should be re-assessed back to 1st November, 1998 (the date the ABI first recommended using the tests). This will apparently apply to both positive and negative results for the gene.[50]

25. All ABI member companies abide by the Code, but some regard it as a "minimum standard" and have chosen to take different positions.[51] The policies of the eleven insurance companies who contributed evidence to the inquiry are laid out below, based on their submissions:

Figure 2: Insurance companies' policies on the use of genetic test results in assessing insurance premiums

Insurance company

Do they comply with the ABI Code of Practice?

Which tests do they consider in insurance applications?

Aegon UK

(Scottish Equitable plc and Guardian)


All seven conditions.[52]

AXA Sun Life plc


All seven conditions.[53]

Barclays Life Assurance Company Limited


All seven conditions.[54]

Co-operative Insurance Society


Only considers negative results for life assurance and, since 13th February 2001, for all other types of insurance.[55]

Legal & General Assurance Company


All seven conditions.[56]

Norwich Union Life


All seven conditions.[57]



Considers negative test results and, since 5th February 2001, positive results only for tests explicitly approved by the GAIC.[58]

Scottish Widows plc


All seven conditions.[59]

Standard Life Assurance Company


Only considers negative test results.[60]

Virgin Direct

Personal Financial Services

Not a member of the ABI

Only considers negative test results.[61]

Zurich Financial Services Ltd

(Allied Dunbar, Eagle Star and Zurich Life)


All seven conditions.[62]

26. One of the most difficult aspects of the inquiry has been to discern, with any degree of certainty, exactly what each company's attitude was to the use of tests. Norwich Union, for example, told us in their initial memorandum that they would use tests for "rare monogenetic disorders...only when approval has been given by GAIC.".[63] Yet at the oral evidence session, Mr Urmston, the company's Chief Actuary, admitted that the Norwich Union is using tests prior to approval by GAIC.[64] In a similar manner, after submitting their original memorandum, the Prudential discovered an "inconsistency" in their policy and submitted a further memorandum to clarify their position.[65] We could speculate that had more insurers been summoned to give oral evidence, various other inconsistencies might have emerged, especially as we had received several memoranda that did very little to clarify their company's position.

27. During the inquiry it also became increasingly clear that there was confusion among insurers about exactly what the ABI's Code of Practice said, or did not say, about which tests should be used. For example, in their written memoranda both AXA Sun Life and Scottish Widows state that they follow the ABI Genetic Testing Code of Practice.[66] Yet Scottish Widows stated that "We intend using tests as and when they are submitted to and approved for the purpose by GAIC." (which would currently mean only considering the test for Huntington's Chorea), while AXA Sun Life told us that they would consider results from all ten tests for seven conditions, based on the ABI's advice.[67] Similarly, at the oral evidence session Mr Beddell-Pearce of the Prudential told us that "The only tests that the industry is using are in relation to Huntington's, early onset familial Alzheimer's and breast and ovarian cancer".[68] We know this was not the policy of several insurers at that time, and Mr Beddell-Pearce himself later stated that insurers could use "certain tests which were already in use prior to the GAIC being set up".[69]

28. The ABI did not initially help to clarify this confusion. The ABI's first memorandum stated that they recommended the use of the ten tests for seven conditions detailed above.[70] During the inquiry, however, we were informed by the Government that the Association had agreed, after the publication of the HGAC's first Report in 1997, that if any tests were not submitted to the GAIC by December 2000 it would advise its members to withdraw from using them.[71] The GAIC informed us that apart from the test for Huntington's Chorea, the ABI had only submitted applications for a further four tests, namely those for early onset familial Alzheimer's disease and hereditary breast/ovarian cancer.[72] During the oral evidence session, the Prudential told us that the ABI would be advising its members to cease using the remaining five tests forthwith.[73] This has subsequently been confirmed by the ABI in its supplementary memorandum.[74]

29. Such a confusing situation can only further cloud an already difficult, and emotive subject. If a Select Committee of the House of Commons with all the resources at its disposal finds it difficult to establish the facts in this case, we can only speculate how difficult it must be for a member of the public. It also creates the distinct impression that the insurance industry either does not know what it is doing, as regards these tests, or is being deliberately unhelpful, neither of which reflects very well on insurers. 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.

22 Back

23  The Implications of Genetic Testing for Insurance, HGAC, DTI, December 1997. Back

24   Ibid., paragraph 6.10. Back

25   Ibid., paragraph 6.12. Back

26   Evidence, p 71, paragraph 5. Back

27  Genetic Testing: ABI Code of Practice, Association of British Insurers, December 1997. Back

28   Qq 45 and 49. Back

29   Evidence, p 43, paragraph (i) and p 46, paragraphs 1 to 5. Back

30   Evidence, p 43. Back

31   Ibid., p 43, paragraph (ii). Back

32   Notes to accompany applications to GAIC for approval to use genetic test results for insurance risk assessment, GAIC, June 2000. Back

33   Evidence, p 43, paragraph (ii). Back

34 Back

35   The other two Commissions are the Food Standards Agency (FSA) and the Agriculture and Environment Biotechnology Commission (AEBC). See and Back

36  Evidence, p 71, paragraph (i). Back

37   Whose hands on your genes, HGC, November 2000. Back

38 Back

39  Association of British Insurers' Policy Statement on Life Insurance and Genetics, Second Report of the Science and Technology Committee, Session 1996-67: HC 328. Back

40   Genetic Testing: ABI Code of Practice, Association of British Insurers, December 1997. Back

41   Evidence, p 54, paragraph 29. Back

42   Genetic Testing: ABI Code of Practice, Association of British Insurers, December 1997, paragraphs 31-40. Back

43   Ibid. paragraphs 13-20. Back

44   Ibid. paragraph 28. Back

45   Ibid. paragraph 11. Back

46   Genetic Testing: ABI Code of Practice, paragraph 6.1. Back

47 Back

48   Professor J.A. Raeburn MRCP is also Honorary Consultant Clinical Geneticist at the Centre for Medical Genetics, City Hospital, Nottingham. Back

49 Back

50   Evidence, p 52, paragraph 9(b). Back

51  Evidence, p 15, paragraph 2.2 and p 36, paragraph 1.2. Back

52   Evidence, p 34, paragraphs 3 and 7. Back

53   Evidence, p 35, paragraphs 3.1 and 4.1. Back

54   Evidence, p 77, paragraph 2. Back

55   Evidence, p 16, paragraph 4.2 and p 32.. Back

56   Evidence, p 50, paragraph 3 (i). Back

57   Evidence, p 19, paragraph 5 and Q 103. Back

58   Evidence, p 13, 15 and 32. Back

59   Evidence, p 68, paragraph 1. Back

60   Evidence, p 36, paragraph 1.3. Back

61   Evidence, p 55, paragraph 2.1. Back

62   Evidence, p 38, paragraphs 1 to 3. Back

63   Evidence, p 19, paragraph 13.  Back

64   Qq 96-98 and Q 103. Back

65   Evidence, p 15. Back

66   Evidence, p 35, paragraph 3.1 and p 68, paragraph 1. Back

67   Evidence, p 68, paragraph 3 and p 36, paragraph 5.1. Back

68   Q 100. Back

69   Q 109. Back

70   Evidence, p 52, paragraph 6 (f). Back

71   Evidence, p 71, paragraph 5. Back

72   Evidence, p 44, paragraph (ii). Back

73   Qq 99-100. Back

74   Evidence, p 79. Back

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