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


Memorandum submitted by the Centre for Exploitation of Science & Technology (CEST)


  1.  CEST is a not-for-profit organisation whose role is to encourage and enable the appropriate application of science, technology and knowledge. It acts as an independent facilitator bringing together industry, Government and third parties to explore and identify blockers and enablers of technology. Most importantly participants focus on cross-sectoral technologies that can lead to new applications and opportunities.

  2.  CEST is based in the UK, but has an extensive European network, which brings together groups of opinion formers (business planners, marketing specialists, scientists and technologists; policy analysts, legislators and regulators and consumer representatives).


  3.  Between September 1999 and December 2000, CEST ran a collaborative programme examining business opportunities and regulatory challenges in the "New Genetics". The consortium included diverse players including: Enterprise Ireland; Glaxo Wellcome; Nycomed Amersham; Human Genetics Commission; Department of Health; NHS Executive; Siemens; Deutsche Telekom; Forensic Science Service; IBM; Unilever; Amersham Pharmacia; and Scottish Enterprise. The comments below reflect the key points that may be of relevance to the House of Commons Science and Technology Committee and do not reflect any particular policy stance by either CEST or the participants.

  4.  As part of CEST's New Genetics initiative a meeting was held in September 2000 to explore issues in Genetics, Insurance and Employment. At the meeting specialist briefings were heard from:

    —  Professor Sandy McCall Smith (Vice-Chair of the Human Genetics Commission);

    —  Dr Jan von Overbeck (Chief Medical Officer of Swiss Reinsurance);

    —  Dr Angus Macdonald (Director, Genetics and Insurance Research Centre, Heriot Watt University); and

    —  Mr Iain Bourne (Office of the Data Protection Commissioner).

  In addition to the consortium members and speakers, a representative from the Association of British Insurers also attended this meeting. In preparation for the meeting, Professor Sandy Raeburn (Genetics Adviser to the Association of British Insurers) and Mr Alastair Kent (Genetics Interest Group) were also consulted.


Unexpected consequences of legislation—defining "genetic tests"

  5.  There are three levels at which genetic tests can be used: predictive, diagnostic or prognostic. Furthermore there is no single form of "genetic test"—they can be based on analysis of specific genes, examination of gene products or based on broader screens or "profiles" of Single Nucleotide Polymorphisms (SNPs). SNP profiles are already being developed by major drug companies, tailored to providing information as to a patient's likely response to a given medicine (ie a prognostic profile). Such tests can be tailored so that they do not give collateral information other than the likely safety and efficacy of a particular treatment course. The application of the specific type of genetic test being applied and its use, therefore determines the type of information generated and its wider utility.

  6.  Will legislation to address questions of genetic testing prevent current medical examination data being used in the underwriting decision? This question is relevant as the underlying results of many existing medical tests, although not using molecular technologies, are determined by the underlying genotype. Where there is either a direct Mendelian-linked genetic basis for a trait (eg blood type) or where penetrance of a susceptibility gene or genes is high, then the results of an existing biomedical test give rise to information that is either directly or strongly linked to an individual's underlying genotype. For example, high levels of cholesterol are usually caused by a particular genotype, although this does not necessarily mean that all with this genotype will have an increased risk of heart disease. Even ultrasound scanning, which may pick out genetically determined foetal kidney defects, provides information that can be extrapolated to a person's genetic make-up.

  7.  Care must be taken therefore when precisely defining: what constitutes a genetic test; when a genetic test can be of benefit; and when a genetic test could add value to medical or underwriting processes.


  8.  Is access to life assurance a right? Since life assurance is provided under voluntary individual contracts (mutuality) rather than as a compulsory scheme (solidarity, eg UK health insurance) can private insurers be compelled to provide universal coverage?

How deterministic are the results of a test?

  9.  Much of the concern about genetic testing is based on the premise that it is determinist—ie that if you have the mutation you will get the condition, in other words inheritance is Mendelian in fashion and penetrance of the genotype is high. However this is clearly not the case in many instances and every disease or human condition is influenced to a lesser or greater extent by both the genotype and the environment.

  10.  Diseases such as asthma, diabetes and heart disease are caused by complex interactions of multiple genes (and the various alleles) as well as environmental influences. Even infectious diseases are influenced by an individual's genotype, although to a much lesser extent—this is typified by people suffering to different degrees when they catch the same cold or influenza infection.

  11.  For a single gene defect with high penetrance, such as cystic fibrosis, mutations in different parts of the gene sequence can give rise to different levels of disease and mutations in other genes may make the condition milder or more severe. In addition there is an environmental influence, although this is minimal.

  12.  In terms of predictive genetic tests, these may be useful where they suggest a lifestyle modification that is clinically relevant. For example, if it is known that an individual has haemochromatosis early in life and lifestyle modifications are made, insurance risk may be decreased. If genetic factors for diseases are declared could premiums be adjusted to reflect subsequent lifestyle changes, perhaps backed by regular health checks? The key point is that genetic testing is only one way of assessing an individual's total risk. Even if genetic test information becomes more deterministic, an assessment of the risk must encompass environmental factors, such as smoking, occupation and hobbies.

Accuracy and relevance

  13.  How accurate are the genetic tests on which underwriting is to be based? Are they relevant to actuarial calculations? These questions are being addressed by the Genetics and Insurance Committee, which was set up in 1999 to examine the "scientific and actuarial relevance of specific genetic tests" to insurance underwriting. GAIC are currently completing a review of 10 tests (for seven conditions) identified as relevant by the Association of British Insurers (ABI). The wider social aspects of genetic testing and insurance will be considered by the Human Genetics Commission. The first test (for Huntington's Disease) was approved for use in underwriting decisions in October.

Association of British Insurers Code

  14.  The ABI have developed a "Code of Practice" that is binding on their members in the UK. The code prohibits companies from asking applicants to take a genetic test when applying for insurance. They only ask applicants to share knowledge of certain test results they have already taken. Clearly there is also the potential to benefit from negative test results for genes associated with a disease where there is a strong familial history—the problem is people are reluctant to take such tests if there is perceived to be an additional penalty either in admitting to the test or testing positive.


  15.  Currently, although we know we are all genetically different we insure ourselves against uncertain events by regarding all people as essentially the same, the uncertainty as random and by consolidating the risks across a large number of people. Underwriting is used to adapt the "randomness" principle by determining the degree of risk of individual applicants. Depending on where on the spectrum of risk people fall, individuals are assigned to different risk pools and charged different premiums. The traditional risk assessment model relies on shared information between the applicant and the underwriter. In essence private insurers assess risks by calculating how often an uncertain event takes place, pooling the risks and setting the premiums at a level where they are able to pay claims.

  16.  In the rare case where a test result predicts a sure event (eg death from Huntington's Disease where repeat length is known) insurance is not a sensible mechansim to cover the event. Insurance is based on predicting uncertainty and if the uncertainty is removed there is no need for insurance.

Adverse selection and liquidity of insurance companies

  17.  If an applicant for insurance knows they have a disadvantageous medical history (eg a highly predictive test result) but does not disclose it there will be an asymmetry of information and they will be quoted a lower premium than the risk they represent to the insurance pool. This is adverse selection and will lead to the premiums of the other members of the pool having to be increased to cover the adverse selection loss. Quite rightly insurance companies must limit adverse selection to remain competitive and to prevent bankruptcy—hence the requirement to declare the results of particular tests or indications relating to medical history that may be predictive in nature.

  18.  There are three issues to consider in terms of adverse selection:

    —  First, in the case of life insurance there will be few significant problems arising from single gene disorders unless the sums assured are above average (this represents the real adverse selection risk). This is because the adverse selection loss is spread over a large pool. The increased premiums in these cases are unlikely to be above 10 per cent and may be negligible.

    —  Second, multifactorial disorders are unlikely to be a problem because the additional level of risk added by each mutation is small.

    —  Third, there will be more difficulties in the area of long-term care and private health insurance. This is mainly because the size of these markets is so much smaller and the individual claims larger and more open-ended. In addition the risk cannot then be shared across such a large pool as for life insurance.

Will testing people with a family history of genetic disease increase their chance of getting insurance cover?

  19.  In the future, difficulty could arise when complex predictive genetic tests or profiles are more commonly available. These are unlikely to provide information regarding an individual's likely susceptibility to long-term disease above and beyond that which can be gleaned from familial history. Indeed, genetic tests or profiles may actually benefit those whose family history suggests they may be at risk of longer-term problems, if they have not inherited the particular mutation or particular gene mutation profile in question.

  20.  Back in 1997 The Wellcome Trust carried out a survey of certain groups of people with genetic diseases or with a family history of disease and sampled their experience of getting a range of insurance cover. The main finding was that there was a lot of confusion from the insurance industry and applicants that were only carriers were being discriminated against. The discrimination identified by The Wellcome Trust was not systematic and much should have improved since 1997 when the survey took place.

A case for state support for uninsurable people?

  21.  In the case of a highly predictive genetic test or gene profile, consideration should be given as to whether additional or alternative state support should be provided. Clearly, in a free-market economy this is not an option and even in a country where there is a welfare state, it is arguable whether any additional insurance or medical support above and beyond that provided through the welfare system is appropriate.

Where is further research required?

  22.  It was suggested by a number of consortia participants that research into the actuarial consequences of use of test results is required to improve the quality of decision-making. The purpose of this research should not be seen as to allow more discrimination, but rather to provide quantitative data to illuminate policy debate, identify potential problems, allay unnecessary fears and achieve fairness in provision.


  23.  These comments were drawn together from the recent New Genetics consortia organised by CEST. It does not reflect any policy recommendation by CEST or the policy of those companies that participated, but is meant to summarise the key points raised.

  24.  Perhaps the most important issue surrounds the need for clarity of definition. The term "genetic tests" covers a multitude of tests based upon different methodologies and with widely differing purposes. It is essential therefore that the House of Commons Science and Technology Committee adopts consistent and clear definitions to understand the range of issues that could arise with respect to genetics and insurance.

29 March 2001

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