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


Memorandum submitted by the Genetic Interest Group

  The Genetic Interest Group is a national alliance representing families and individuals affected by genetic disorders. Members of GIG include those with existing conditions, relatives of affected individuals, people at significant risk of developing a genetic disorder in the future and those at increased risk of having children with a genetic condition.


  1.1  In the area of genetics and insurance, as in many others, a clear understanding of what is meant by the term "genetic information" is important. Most of the public and policy discussion of the issue genetics and insurance over the past five or six years in the UK has focused on the possible use by insurers of predictive DNA test results on adults who are currently free of the condition to which the test result is thought to be relevant. However, another form of predictive genetic data, family history, has been used by insurers for many years, often resulting in increased premiums or a denial of cover. A further, and most probably larger group who also lose out in the insurance context is made up of people who have disabilities or are already ill. They may face a shortened life expectancy or a greater need for care than the average person. This may be for genetic reasons, as in, for example, the case of a person with cystic fibrosis, or it may not.

  1.2  A realistic assessment of the predictive power of genetics and of government and individual behaviour in relation to predictive testing, suggests that those with a family history and those with existing disabilities or illnesses are likely to constitute the largest group who experience problems in the insurance context for the foreseeable future. We should not lose sight of this when examining the use of predictive DNA test results.

  1.3  The significance of genetic information will also depend on the form of insurance sought and the wider social context, including non-insurance-based means of support. The situation in the UK differs markedly from the United States in the latter regard. In the US, the centrality of insurance to the delivery of healthcare, a clear social good, has dramatic and clear implications for the use of genetic data by insurers. Couple this with the fact that many employers cover their employees' health insurance in group schemes, and the danger of exclusion from cover and even work is a real one. In the UK, the existence of the National Health Service removes this problem for most people. If the UK Government were to follow the policy of the Scottish Executive, the same would also be true of long-term care.

  1.4  Currently, insurers seek information that is already known to the individual. If a requirement for genetic testing for insurance were to be introduced it would certainly alter the situation dramatically. Should insurers seek to change policy in this way the public and professional backlash would be considerable. In GIG's view, the taking of samples without clinical need would be unethical and if done without consent would probably constitute an assault. In sum, it is a policy that GIG and probably all other genetic support groups would resist strongly were it even to be mooted. In reality however, there is little evidence that the insurance industry is thinking along these lines, and the Association of British Insurers has repeatedly stated that no such requirement will be introduced. We would caution against repeated hypothesising that such a policy might be introduced in the absence of any serious evidence. There are real problems to address as it is, and these are not best addressed by alarming the public about what might be the consequences of such a volte face by the insurance industry when there is no evidence it is likely.

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

  2.1  Families with rare conditions such as Huntington's disease and familial Alzheimer's are those for whom the debate about predictive data on healthy individuals is currently relevant. Materially more would probably gain than lose from the use both ways of predictive DNA test results compared with not using the results at all. For many people in particular insurance contexts, the possession of a family history of such conditions is sufficient to make the insurance product unaffordable. In such cases the extra loading due to a DNA test result indicating a higher risk is therefore immaterial. But on the other hand those shown by a test to be at much lower risk could be offered normal rates. Regulators and policy makers should take care to ensure that they do not make things worse by simply banning the use of data altogether, or by making changes that the insurance industry then reacts to by protecting its own interests at the expense of groups of genetic patients.

  2.2  As a matter of social policy it has been suggested that test results indicating that a person does not possess the disease-causing gene variant should be used but not those indicating the presence of the disease-causing gene. Evidence suggests that, as long as standard family history data and other medical information was still used, insurers would face only a very limited amount of adverse selection now and most probably in the future as well. Such a policy would benefit some individuals today. But that would only come at the expense of those in the family history "pool" if the rates offered to those with a family history were adjusted upwards based on estimates of how many might also be in possession of DNA test results indicating a higher risk. If the policy of not using test results indicative of the presence of the disease-causing gene is adopted, measures should also be put in place to ensure that family history levels are not adjusted upwards. Once again, regulators need to think carefully about the knock on effects of their actions if people are to benefit.

  2.3  In GIG's view, a system of solidarity should hold in health and other areas such as long-term care where the needs of the individual are being met. In relation to life insurance some form of disaggregation according to risk seems inevitable. It is a question for debate and public policy how far that should go. Currently risk pooling in the former areas is achieved through the NHS and in a more limited way through the state provision that exists for long-term care and through forms of disability payments to those unable to work. In these areas the insurance markets are quite small, though growing. If insurance were to become the primary means through which individuals secured the services they needed in these areas, GIG would press for a system of non-disclosure of all health data.

  2.4  Working on the assumption that some form of genetic data (whether arising from DNA test results, family history or other clinical symptomatology) will continue to be used, the question arises as to the extent to which a company can, in pursuit of its commercial strategy decide not to accept a particular type of business, even after following a rational, reasonable process. What would be the implication if a large number or all insurance companies were to go down this same route? Would there need to be an element of compulsion in order to make this social good available, and if so, what form might it take? (See section 3 below).

3.   How effective do you feel the current regulatory system is?

  3.1  The issue of misinterpretation, specifically the danger that data may be given a predictive power that it does not merit, concerns GIG. The current regulation of predictive tests results by the Genetics and Insurance Committee (GAIC) addresses this in part. Specifically, the use of hurdles—50 per cent raised mortality and 25 per cent raised morbidity—is a useful barrier to the misuse of mild predisposition data. GAIC have only approved tests in relation to one condition so far (Huntington's disease, as of 1 February 2001), and do not expect to receive applications for the approval of products in relation to more than a handful of predictive DNA test results in the short to medium term.

  3.2  However, the hurdle model does not address the quality, that is the actuarial accuracy, of the data that is actually used by companies. Couple that with the fact that the hurdle only has to be cleared for one age group for the condition to pass the regulatory test, and it is quite conceivable that poor data could be used in assessing a number of conditions. It should be noted that Huntington's disease crosses the hurdles with considerable ease at all age groups.

  3.3  The industry would argue that this is not proof that data is commonly misinterpreted. It is also the case that a hurdle model is the norm for the use of all data that is typical of a free market system working on the basis of the "freedom to underwrite". But, to maintain the focus on predictive DNA test data on healthy individuals, if some of this data were to be used in the future, the clear possibility is that in the first instance associations with disease would be generated rather than any other, possibly health giving, effects of the same alleles. Similarly, if studying individuals with conditions generates the data, the risk will be that the penetrance of the allelic variants will be exaggerated (as happened initially with BRCA1).

  3.4  This is an issue for the future, and there are other factors that count against such a scenario, including the implausibility of widespread testing in the clinical context before measures can be taken to reduce what will in any case be relatively small risks which may not cross the existing hurdles used by GAIC. Presently, GIG's concern is that the rarity of many genetic disorders can encourage insurers to adopt a cautious attitude, one that protects their interests, when faced with genetic information. This is because the numbers of people with such conditions may be too small for companies to have an incentive to market attractively priced products. Unless up-to-date medical information is brought to bear on actuarial calculations, individuals will be loaded on the basis of the risks run by people in the past, or those in whom the phenotypic effects are clear and harmful.

  3.5  There is anecdotal evidence that this is what often happens in practice. It would be useful to research this point further. In addition to studies using the experience of GIG's member groups and other genetic charities, it would be interesting to examine the models used by individual companies, perhaps using applications by hypothetical individuals.

  3.6  The concerns outlined above arise from the rarity of the conditions rather than the nature of the information used, whether it is medical data on someone already ill or disabled with a genetic condition, family history data, or predictive DNA test results on someone unaffected by an associated condition. This reinforces the points made in 1.1 and 1.2.

  3.7  To address these issues, GIG would like to see an additional hurdle used within the regulatory process. Companies that use genetic data of any type would need to be able to show that the data they use is actuarially accurate in the light of the most recent science. This would include an understanding of therapeutic options as well as genetic, actuarial and epidemiological data. What is accurate data may of course be a moot point. However, a body such as the UK Forum for Genetic and Insurance could be called upon to develop the best consensus available, based on collaboration between academic actuaries, geneticists and the condition-specific patient groups. The default position should be that genetic data is not used until it has been examined in this way.

  3.8  To focus on predictive DNA test results specifically, GIG takes strong exception to the possibility of people not being able to be assessed as a standard risk as a result of a test result that shows that they are free of the disease-causing mutation. Currently, the insurance industry is operating according to a principle of equivalence between positive and negative test results. If they can't use one, they say, they will not use the other. The result would be that someone with a family history of an adult-onset dominant disorder, for example who has been shown not to possess the mutated gene as a result of a DNA test would nevertheless be assessed as if they hadn't had the test. That would be absurd.

4.   Do you feel that the use of genetic test results could have an effect on medical research and progress in your area?

  4.1  We are not aware of any substantial evidence of this, although it is of course a possibility. Samples collected for research purposes should have no bearing on insurance decisions, if for no other reason than that the information is generally not fed back to the individual.

  4.2  It has been suggested that the use of genetic information by insurers might discourage people from taking tests in the clinical context that have potential benefits. Again though, there is little evidence of this, and some evidence to the contrary—demand for genetic testing is rising across the country and regional genetics centres are under pressure to meet the increasing workload. Much of the debate about the consequences of patenting the BRCA1 gene has focused on the assumed inability of the NHS to afford to purchase the test for all those demanding it.

  4.3  It could be that people are just unaware of the possibility that test results may affect them in an insurance context. There is anecdotal evidence that this is the case. But there is also evidence that for those who are aware of the issue the potential impact on insurability does not figure largely in their minds when contemplating predictive testing for a serious genetic disorder—other issues, about health and their future lives are more important.

  4.4  To shed further light on this issue, specific research looking at actual behaviour should be commissioned.

1 February 2001

previous page contents next page

House of Commons home page Parliament home page House of Lords home page search page enquiries index

© Parliamentary copyright 2001
Prepared 3 April 2001