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


Memorandum submitted by The Wellcome Trust


  1.  The Wellcome Trust (the "Trust") is an independent, medical research-funding charity, established under the will of Sir Henry Wellcome and funded from a private endowment, which is managed with long-term stability and growth in mind. Its mission is to foster and promote research with the aim of improving human and animal health. The Wellcome Trust supports more than 4,000 researchers at 300 locations in 42 different countries. In addition, as well as funding major initiatives in the public understanding of science, the Wellcome Trust is the country's leading supporter of research into the history of medicine.

 (i)   What do you feel to be the main benefits and disadvantages of insurance companies using genetic test results in assessing policies?

  2.  The relevance of genetic test results to insurance is complex. It depends on the insurance product being offered, on the underwriting practices of the individual insurance company, and on national policies for organising social benefits such as housing, healthcare and long-term care in old age.

  3.  Essentially genetic tests can be used as one of the predictors of future ill health. Therefore there are a number of reasons why insurers might believe it is in their interests to seek disclosure of genetic test results:

    —  That the results of genetic tests would provide them with an empirical evidence base by which to set insurance premiums related to health by identifying a "pool" of higher risk individuals and excluding them from coverage. Alternatively, high risk individuals could have their premiums adjusted to take account of the increased risk.

    —  The second motivation is a fear of adverse selection—essentially that people with private knowledge of an adverse genetic test result might insure themselves disproportionately as a reaction to that result and without telling the insurer of their status. This is, in essence, an attempt to defraud the insurer.

  4.  Knowledge of these test results would be seen as an advantage to the insurers by reducing their risk and improving their financial results.

  5.  However, the disadvantage of this approach is that the scientific evidence and the predictive quality of genetic research used in medical research cannot be immediately translated into actuarial calculations of when a person will develop a certain disease and if they will die within the term of the insurance policy.

  6.  This is because genetic tests are very good at identifying those individuals who have a genetic abnormality, a mutation in, or absence of, a particular gene. However, even for the highly heritable single gene disorders, there is less certainty in identifying who will go on to develop the disease and at what stage they will develop the disease. There are examples where a minority carry the genotype which should lead to disease expression but they do not. Therefore genetic tests are not (yet) good at predicting when disease will start, how rapidly it will progress, and thus when death will occur.

  7.  This was one of the conclusions in the report produced by the Human Genetics Advisory Commission (HGAC), established by this same Select Committee, "The implications of genetic testing for insurance", published in December 1997. In its report, the Commission concluded that there was insufficient evidence to support the use of genetic test results in life insurance and recommended a moratorium for at least two years.

  8.  The HGAC laid out the methodology it expected to see followed in the evaluation of the scientific and actuarial evidence presented in support of a specific genetic test or insurance products. It expected that:

    "the connections between specific test results and discrete actuarially relevant events would be established by way of research published in peer-reviewed journals. Such research will require increased collaboration between geneticists, clinicians, actuaries and others".

  9.  In the subsequent three years the Trust is not aware of a significant body of such work which has been conducted and published in line with the conditions outlined above.

  10.  Therefore specific research correlating gene changes with mortality experience is still necessary before insurance implications can be safely assessed. The medical genetic literature remains poor in this area, and insurers appear to have conducted little research of their own or made attempts to fund this work by others.

  11.  It is worth noting that this opinion appears to be held within the insurance industry itself as the request for disclosure of genetic tests is not a universal requirement by all companies. The committee may wish to seek the views of those companies who in the past have not decided to request disclosure of genetic test results[1]. The current situation is not known.

  12.  The Wellcome Trust has taken several initiatives to try and promote research and analysis that would be relevant to public policy in this area.

  13.  During 1996, staff in the Trust's Policy Unit undertook research into perceptions of genetic discrimination in life insurance. The results were published in the BMJ in 1998[2]. As far as the Trust is aware, no other empirical study of genetic discrimination in insurance within the UK has been conducted.

  14.  In 1997, the Governors of the Trust established a programme to support research into the social, ethical and public policy implications of advances in biomedicine, focusing particularly upon neuroscience and upon genetics. The Trust has received one preliminary approach from an academic group, but has yet to receive a full grant application even though research projects in the area of genetics and insurance would be eligible for funding under this programme.

  15.  The Trust made a significant financial contribution as a founder member of the UK Forum for Genetics and Insurance, set up following an initiative by the Institute and Faculty of Actuaries in 1998. (Membership does not however mean that the Trust necessarily subscribes to all statements put out by the UK Forum).

 (ii)   How effective do you feel the current regulatory system is?

  16.  There does not appear to be an effective form of regulation. The recommendation of the HGAC for a moratorium on the use of genetic tests by insurers for two years was not endorsed by Government but they did opt instead to establish a new body: the Genetics and Insurance Committee (GAIC). The Association of British Insurers have only an agreement to abide by the GAIC findings, it is not a statutory requirement. This body has only produced one judgement, on Huntingdon's, published on their website. Whilst the background information which informed their opinion was open to review by a small number of relevant individuals, the justification for their decision was not subject to the rigours of peer review required for publishing in a respected journal as recommended by HGAC.

  17.  Therefore a concern remains that decisions made by GAIC are open to question as their methodology is not available for scrutiny. In addition the ABI are not legally bound by any such decisions.

 (iii)   Do you feel the use of genetic test results could have an effect on medical research and progress in your area?

  18.  There was considerable media interest in the decision by the GAIC to allow the results of genetic tests for Huntingdon's to be used by the insurance industry and therefore a link has been established in the public arena between genetic tests and financial implications.

  19.  If this results in an increase in discrimination by insurers for people undergoing genetic tests then there is the potential that people will become more wary of consenting to participate in medical research studies and trials. The Trust has noted comments made by many clinical geneticists at conferences that patients from families affected by a genetic disorder do take insurance considerations into account before deciding whether or not have genetic tests.

  20.  In addition, neither Government nor the insurance industry have made any provision for those individuals who might "fail" an approved genetic test and be excluded from insurance as a result. The Committee may wish to examine what provisions would be appropriate for individuals whose insurance applications are rejected on genetic grounds, in particular whether provisions should be made from public funds or from pooled resources within the insurance industry.

  21.  The Trust would not argue that this will have a major effect on medical research in isolation but it could begin to tarnish the reputation of genetic research with a resultant loss of public confidence. Genetic testing could become associated with sharp commercial practice with little independent regulation.

  22.  Our own research into public attitudes has revealed that access by third parties to the results of genetics tests is a major concern when members of the public consider human genetics research. It is raised repeatedly and unprompted in public discussions and notably through the recent public consultation research into the proposed human biomedical samples collection[3]. There is minimal awareness of those regulations and guidelines intended to protect individuals' privacy in such cases and it appears that the insurance industry is trusted even less than genetic researchers.

  23.  Research on public attitudes sponsored by the insurance industry has also highlighted [the]:

    "significant mistrust among customers of insurance companies—not just life offices—which have built up over a long period of time".

  This study commissioned by Swiss Re Life and Health in 1998 suggested that only 8 per cent of the public believed they should be obliged to share the results of genetic tests with their insurance company[4].

  24.  Last year's House of Lords' report discussed the relationship between science and society in terms of a "crisis of confidence". The regulation of genetics and insurance must be judged against the criterion of whether it will help diminish that crisis or whether it risks exacerbating the situation. On the present evidence, the judgement must be that it risks contributing still further to that crisis.

22 January 2001

1   Examples of insurance companies who did not use genetic test results to determine life insurance premiums in 1999-Britannic Assurance (asks for information but doesn't use it for life insurance), Equitable Life, Hiscox, Ideal Benefit, London Life Ltd., National Mutual Life, Pinnacle, Standard Life, Virgin. Genetic Ransom: Policy challenges in genetic testing. Joanna Harkness MSc thesis, Science Policy Research Unit (SPRU), University of Sussex. Back

2   Low L, King S & Wilkie T (1998), "Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom", BMJ, 317, pp 1,632-1,635. Back

3   Public Perceptions of the Collection of Human Biological Samples, The Wellcome Trust, 2000. Back

4   The Insurance Report 1998-Life Results, Swiss Re Life and Health Limited, 1998. Back

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