Things to consider before having a genetic test

Making a decision to have a test for a gene linked to a risk of cancer can be hard. It’s important to take the time to think through a number of issues, including how you might feel if you find out that you do have a faulty gene. During the testing process, you may discover things about your family that you didn’t know before. It’s also important to think about whether or not to tell other family members. Some people prefer not to know.

If you do have a positive result, there are things you can do to look after your health, reduce the risk of developing cancer, or detect any early signs of cancer through screening. But knowing you are at a higher risk of developing cancer can be difficult, both for the person tested and for other family members. Your family history and genetic test results can also have an effect on your ability to get some types of insurance.

Considering having a genetic test

Before you decide to have a genetic test, you need to think about how you might feel if you find out that you have one of the gene changes that increases your risk of getting cancer. Some people want genetic testing in order to find out they’re all right and haven’t inherited a genetic mutation. But before you go ahead, you need to prepare yourself for possible bad news too.

You may want to consider how you feel about the options available if you have a positive test result, such as detecting early signs of cancer (screening) and reducing your risk of cancer. 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

Through the testing process, you may also find out other things about your family that you didn't know before. Genetic testing is family-based, and if you’re not related by blood to one or both of your parents - for example, if you were adopted or because of family secrets - then you won’t have the same genes as other family members.

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 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.

Something else to consider is that not everyone in a family will want to know about their risks of developing cancer. Finding out this information can sometimes upset family members who would prefer not to know.


Insurance

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.


Confidentiality

Your doctor isn't allowed to tell anyone that you've 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 cancer genetics research. 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 will have access to it.

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


Back to Genetic testing and counselling

Inherited cancers

If a cancer occurs more often in a family than in the general population, some people in the family may have inherited a cancer susceptibility gene.

Lynch syndrome

Lynch syndrome (LS) is a condition that can run in families. It increases the risk of bowel, womb and some other cancers.

Genetic counselling

A genetic consultation is a discussion with a person trained in genetics. They will advise you on your risk of developing cancer.

Genetic testing

You will only be offered genetic testing if your family history suggests you may have inherited an identified faulty gene.

OPERA tool

OPERA is an online information tool for people concerned about their inherited risk of breast and/or ovarian cancer.