Issues to consider before having a genetic test

What if the test is positive? Back to top

Some people want genetic testing in order to find out that they are all right and haven't inherited a genetic mutation. But, before you go ahead with testing, you need to prepare yourself for possible bad news too.

You may want to consider how you feel about the options for detecting early signs of cancer (screening) and reducing your risk of cancer if you have a positive test result. You may be offered more than one counselling session before having genetic testing. It's important that you take as much time as you need before deciding whether or not to have the test.

Information about your family Back to top

Through the testing process, you might also find out other things that you didn't know before. Genetic testing is family-based, so if you are not related by blood to one or both of your parents, for example, if you were adopted or because of family secrets, you don't share your genes with all your family. It's possible that through talking about family risk and family relations you could suddenly discover things you didn't know about your family. It can be quite a shock to find out facts about your family that you weren't aware of. If this happens to you, there are people who can help, including professional counsellors.

Insurance Back to top

Some people are worried that once they have 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) between the Department of Health| and the Association of British Insurers| (ABI). This is in place until 1 November 2014 and will be reviewed by the Department of Health and the ABI in 2011 to decide what the situation will be after the Moratorium expires in 2014.

In the agreement, among other things, insurers give ten commitments on the information that 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 Genetics and Insurance Committee (GAIC).

GAIC is an advisory public body that reports to the Government. The Department of Health has recently decided that GAIC should be disbanded. At the moment, the cancer susceptibility genes are not on the list of genetic tests that were approved by GAIC, and so can't be asked about by insurance companies (above the limits of £500,000/£300,000). However, this may change in the future.

The details of the agreement can be found online on the ABI's website (www.abi.org.uk|) 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.

However, if you have had cancer already, or if many of your close relatives have had cancer at a relatively young age, insurance companies might 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.

Confidentiality Back to top

Your doctor isn't allowed to tell anyone that you have had a gene test, or what the result is, without your consent. When your doctor or nurse takes your blood for the gene test they may also ask you whether they can use the blood sample for research in the area of cancer genetics. This may help scientists to find other cancer genes in the future. If you agree that your blood sample can be used for research purposes, it will be handled by other scientists, but they won't be able to find out your personal details.

In very rare circumstances, the courts have authorised the police or lawyers to use the information contained in medical and research databases.

If you are concerned about the confidentiality of your blood test information, feel free to ask your doctor or nurse about it. They will be able to explain how your sample will be handled and who can have access to it. You can also contact our cancer support specialists with questions about clinical research and confidentiality.

If your family history suggests that the cancers in your family may be caused by a genetic factor, but you decide not to have a genetic test, you will be offered all the services (cancer screening, prevention) available to people at higher risk. You don't need to have a genetic test in order to have screening.