UK Forum for Genetics and Insurance
Responses to the 'Whose hands on your genes?' consultation
Introduction
1. The UK Forum for Genetics and Insurance (UKFGI) was established in 1999 to encourage wide-ranging dialogue between the many different groups of people who have a personal, professional, academic, public or commercial interest in the development of genetic knowledge and the potential impact of genetics on all types of insurance. Its membership includes physicians, geneticists, social scientists, actuaries, underwriters, health service workers, insurers and members of families affected by inherited conditions.
2. These comments on the consultation paper "Whose hands on your genes?" are restricted to the section of Chapter 9 that deals with insurance, since this reflects the particular interest of the UKFGI.
Personal genetic information and insurance
Question 9.1:
3. In general, the section of this chapter dealing with insurance is a fair representation of the issues surrounding the use of genetic test results for insurance purposes. However, the UKFGI would like to make the following recommendations:
4. Para 9.3: The "evidence" quoted in paragraph 9.3 has not been referenced and therefore cannot be evaluated. Further, this is of no relevance to the UK where no such events have been documented. As such, the conclusion drawn that "some insurance companies may be tempted to adopt sweeping exclusionary practices if not prevented from doing so" is not a proper inference for the UK and its inclusion in a document of this nature will only serve to create a false impression that this may be a possibility.
5. Para 9.9: In this paragraph, there is an underlying implication that insurers will require genetic tests at some time in the future. This paragraph would be better balanced if it re-iterated the ABI code of practice that specifically excludes this.
6. Para 9.9: In this paragraph it is noted that people might avoid taking genetic tests and therefore lose out on the resulting medical benefits if they were required to disclose the results to insurers. While this is often cited as a reason that genetic tests should not be used for actuarial purposes, the UKFGI is not aware of any evidence that this would actually be the case, particularly if undergoing effective treatment was accounted for in setting insurance premiums.
Question 9.2
7. The UKFGI believes that personal genetic information is in reality not substantially different from other medical information, personal history and family history for the following reasons:
8. Family history is already a reasonably accurate indicator of the genetically based disease risks faced by members of a family, and this applies to all forms of genetically based diseases including single gene and polygenic diseases. It should also be made clear that insurers usually request only a very limited amount of family history information, which may include age at death and cause of death of close relatives, and this has been an accepted policy for many years.
9. At present, genetic testing is only useful for assessing individual risk for rare single gene disorders (or diseases where a small number of genes are involved) where the risk can also be assessed on the basis of family history. As such, genetic testing will serve primarily to confirm individual risk as assessed on the basis of family history, or exclude inheritance of a mutation known to run in a family.
10. The majority of diseases of concern at a population level (eg. heart disease, sporadic cancers) have a large environmental component. As such, it is unlikely that the genetic contribution, once established, will provide a more accurate prediction of individual risk than a simple family history, which sums up both the genetic and the environmental contributions. In these cases, it is unlikely that the genetic tests in question will reach the threshold set by GAIC that will allow their use for actuarial purposes.
11. In summary, family history includes genetic information, environmental information, etc. and DNA-based genetic information is only a component of this. Family history provides insurers with a sufficiently accurate assessment of an individual's genetically based disease risk in most circumstances and this has been an accepted practice for many years. However, once a genetically based disease has been identified in a family on the basis of family history, the results of a genetic test could either serve to demonstrate that an individual member of that family has not inherited the mutation and would therefore be eligible for insurance on standard terms, confirm inheritance and therefore increase the likelihood that prophylactic measures will be followed to minimise the risk of developing the disease.
Question 9.3
12. The overriding principle in the use of pre-existing genetic test results should be one of fairness and equality between the parties entering into an insurance contract. The results of any genetic tests that an individual chooses to undertake and that are approved by GAIC should therefore also be available equally to the underwriter when an insurance contract is being considered. Insurance companies have, until very recently, relied entirely on family history, age, sex and lifestyle factors to assess risk with regard to life insurance, and individuals applying for life insurance have been required to accurately disclose this information. This practice has generally been accepted because it is inherently fair that both parties entering into a contract should have full knowledge of all the factors pertaining to that contract. Genetic test results, regardless of the public perception of this information, are additional factors that could be considered together with family and personal history by each party entering into a contract for life or health insurance, subject to the test being approved for such use by GAIC.
13. Here it is important to emphasise that, with the exception of a small number of single-gene disorders, genetic test results are very unlikely to be given substantial weight by insurance Companies because family and personal history will provide a better assessment of risk. Further, if insurance companies are to take account of a genetic test result, the test will need to be approved by GAIC according to the following criteria: the test must be clinically relevant and must be significant from an actuarial perspective with an expected additional mortality risk of 50% of the expected mortality risk, or additional disease risk of 25% of the expected risk for the insured population. Importantly, it is highly unlikely that individual genetic tests for common polygenic, multifactorial diseases such as heart disease or sporadic cancers will meet these criteria.
Question 9.4
14. Each type of insurance should be considered separately, as the factors relevant from an underwriting perspective are different for different types of insurance. It should also be noted that there is in future the possibility that results of specific genetic tests may be of relevance to types of insurance other than life and related forms. An example might be a genetically defined predisposition to fainting spells and the effect this would have on the availability of automobile insurance (or the availability of a driver's licence?).
15. If a condition is treatable and the proposer is receiving treatment, this fact should be taken into account in the underwriting decision.
16. It is clear that the primary risk to insurers resulting from unequal sharing of risk information derived from genetic test results arises in the case of very large sums assured. As such, it would seem reasonable for the insurance industry to establish a threshold below which the disclosure of an agreed genetic test result will not be requested, as has been done in the case of life insurance policies accompanying mortgages of up to £100,000 for the purchase of a primary residence.
Question 9.5
17. It is evident to the members of the UKFGI that public perception of the uses to which genetic test results can be put by insurers is somewhat unrealistic. At present and for the foreseeable future, the genetic tests being considered by GAIC are for monogenic disorders and these apply only to very rare conditions. The results of the genetic tests for these conditions will therefore influence a very small number of underwriting decisions and in these particular cases, the risk will have already been identified on the basis of family history with genetic testing serving primarily to confirm or deny that risk. Meanwhile, in the case of diseases that do effect a large number of people, such as heart disease or sporadic cancers, environmental influences are likely to dominate the genetic influences to such an extent that, for the foreseeable future, family and personal history are likely to be more accurate predictors of disease onset. However, the perception of the general public appears to be that the majority of insurance decisions will rest, entirely on the results of a genetic test. Unfortunately, this gives genetic test results a far greater prominence than they merit and the UKFGI would like to highlight the need for increased levels of public education on genetics generally and on the uses of genetic test information specifically to encourage a more balanced view of the situation.
18. It is also evident that the general public is concerned about the confidentiality of genetic test results disclosed to insurers. The insurance industry has an excellent track record in the protection of individuals' personal and medical information, and the ABI Code of Practice specifically deals with this issue. As such, this should be highlighted within the document.
General Comments
The term 'unfair discrimination' is used several times in the document without any definition being provided. Clearly, the terms 'fair or' 'unfair' can have widely different meanings to different readers. The UKFGI would therefore suggest that a definition be put forward to clearly establish what is meant by 'unfair discrimination' and to clearly differentiate this from established practices of risk ascertainment. The UKFGI would be very willing to participate in a discussion to establish such definitions.
The UKFGI also feels it would be of benefit to emphasise that the insurance industry is subject to a high level of competition that will, as in other industries, regulate the behaviour of the companies involved to the benefit of the general public. Should one insurance company seek to attach excessive premiums to a particular genetic test result, they will simply drive business to other companies who do not take the same view and offer more reasonable rates.