Some people are worried that once they've had a gene test they may be discriminated against – for example, by insurance companies. There is currently no legislation in the UK that prevents discrimination on the basis of genetic differences. However, there is a voluntary agreement (called the Concordat and Moratorium on Genetics and Insurance) between the Department of Health and the Association of British Insurers (ABI).
In the agreement, among other things, insurers give ten commitments on the information they ask of customers. For example, they won't ask customers to:
- have a predictive genetic test in order to obtain insurance
- tell them about a family member's test results
- tell them about any predictive or diagnostic genetic test results acquired as part of clinical research
- tell them about any predictive test results that are made available after their policy has started, for as long as that policy is in force.
The Moratorium (which forms part of the Concordat) ensures that customers won't be required to disclose the results of predictive genetic tests for policies up to £500,000 of life insurance, or £300,000 of critical illness insurance or paying annual benefits of £30,000 for income protection insurance.
Over these financial limits, insurers can only ask about predictive tests that were approved by the Human Genetics Commission's Monitoring Group on Genetics and Insurance (which replaced the Genetics and Insurance Committee, GAIC, in 2009).
The Moratorium is in place until 2017 and will be reviewed by the Department of Health and the ABI in 2014. They will decide what the situation will be after the Moratorium expires in 2017.
The details of the agreement can be found online on the ABI’s website or obtained from the Department of Health. You can get a leaflet called Genetic tests and insurance: what you need to know from the ABI website or by contacting them.
However, if you've had cancer already, or if many of your close relatives have had cancer at a relatively young age, insurance companies may increase your premium simply because of your family history. The same applies for private health insurance for cancer care and treatment. If you (or a high number of your relatives) have had cancer already, it will be harder (and more expensive) to get insurance cover.
Under the terms of the Concordat, insurers agree that customers may choose to disclose predictive genetic test results that are in their favour in order to override family history information. Most insurers will take the result of such a test into account, provided that the result is from a reputable source.