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Genetics and insurance: fighting the wrong battle?

27 February 2006
By Dr Alison Stewart
Public Health Genetics Unit, Cambridge
Appeared in BioNews 347
The last two weeks have seen yet another outcry on the topic of 'genetic discrimination' in insurance. The main thrust of the argument is that because we cannot do anything about our genes it should be illegal to treat us differently on the basis of our genetic risk of death or disease. A related argument is that if insurers were allowed to use genetic test results to assess risk, people might be deterred from taking genetic tests that were in their best medical interests.

These arguments have flaws both of fact and of logic. Life insurance and various other types of insurance 'product' such as critical illness cover or income protection operate on a 'mutual' or risk-rated basis. This means that if an individual applies for insurance, their risk for the outcome they wish to insure against is assessed, and they pay a premium based on that risk. In other words, the whole system depends on 'discriminating' among different individuals. The argument that known genetic risk should be excluded from the assessment is difficult to justify. We accept that other differences we can do nothing about, such as sex (also, incidentally, a genetic trait) and age can be taken into account, so why should genetic factors be exempt?

If we want to have an insurance system that does not discriminate against individuals who know they are at higher risk - for whatever reason - then we need a different insurance system. In a 'solidarity' system (of which the National Health Service is an example), people pay into the system either equally or on the basis of some other factor that is not directly related to their risk. In solidarity-based systems average premiums are higher, so if we want to remove discrimination in insurance we have to accept that the trade-off is that overall premiums will rise. Some types of insurance product could become financially inviable and might no longer be available. The decision about what type of insurance system we want is a social and political one that puts the onus on all of us to 'put our money where our mouth is'.

It is probably utopian to expect that genetics will lead to a change in our entire private insurance system. If we retain the current mutual system then what, realistically, would be the effect of allowing insurers to use the results of 'predictive' genetic tests? The term 'predictive' testing is only really applicable for highly penetrant adult-onset Mendelian conditions such as Huntington's disease, or familial breast cancer associated with mutations in the BRCA1/2 genes. In general, people who know they are at high risk have a family history of the condition - that is how they know they are at risk. Insurance companies have for many years used family history in underwriting so at-risk family members are already likely to be subject to raised premiums. In this situation a positive genetic test result might not make things much worse; a negative result, on the other hand, will show that the applicant has not inherited the pathogenic mutation and so may request to be insured at standard rates. It seems likely that the main reason why insurers are not actively seeking to use genetic test results for conditions other than Huntington's disease (which, because of its untreatability and extremely high penetrance is really in a class of its own) is that they think family history probably tells them as much as they need to know.

What about the argument that individuals will be deterred, by fears about insurance, from taking tests that are important for their health? Here, too, clearer thinking is needed. Why would a test result be important for health? Presumably because, on the basis of that information, some action can be taken to reduce the risk of disease. If disease risk can indeed be reduced then insurers should take that into account in underwriting decisions. Encouragingly, there is evidence that, in the case of both familial hypercholesterolaemia and familial breast cancer, some insurers are indeed willing to reduce rates for people who have taken risk-reducing measures.

Those who are lobbying so actively to have genetic test results excluded from underwriting decisions are fighting the wrong battle. They should instead be concentrating their energies on ensuring that genetic tests are only used clinically when clear clinical utility (in other words, health benefits) can be demonstrated, that insurance companies are required to disclose and defend the evidence on which their decisions are made, and that pressure is put on insurers to agree that if an individual takes risk-reducing action on the basis of a genetic test result, they will be rewarded by lowered premiums.

14 September 2009 - by Rosie Beauchamp 
A study published in the Medical Journal of Australia indicates that up to 50 per cent of Australians could be refusing genetic tests due to the fear that the test outcomes will result in increased health insurance premiums or refusal to insure them altogether. In Australia, genetic information does not inform health insurance. However, it may affect insurance policies that cover trauma, disability, sickness and accidents. Applicants for such health insurance policies have a statutory duty to...
29 March 2006 - by Anne Begg MP 
Genetic testing potentially holds the key to providing many treatments, and possibly even cures, for a whole range of diseases. The knowledge that someone has a genetic condition or propensity may determine lifestyle choices, or help in early detection so that remedial treatment can prevent the symptoms from occurring. As...
20 February 2006 - by Dr Helen Wallace 
Last week, in a Joint Statement of Concern, forty-five organisations and individuals expressed their fears about the lack of safeguards to prevent genetic discrimination. The Statement calls on the Government to legislate against the use of genetic test results in employment and insurance. Many European countries have such laws, however...
16 February 2006 - by BioNews 
Nobel prize winner Sir John Sulston has repeated his call for new UK laws to prevent genetic discrimination. He says that when the current moratorium on the use of genetic tests results by insurers runs out, in November 2011, it should be replaced by legislation. Professor Sulston, who is vice-chair...
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