Genetic Testing

You may be offered a genetic test because:

• your doctor thinks you might have a health condition caused by a change to 1 or more of your genes
• someone in your family has a health condition that's caused by changes to genes
• some of your close relatives have had a particular type of cancer that could be inherited
• you or your partner have a health condition that could be passed on to your children

If you have any questions, talk to your doctor about having a genetic test.
 

Genetic tests are sometimes recommended to:

• help to diagnose a rare health condition in a child
• help you understand whether an inherited health condition may affect you, your child or another family member, and help you decide whether to have children
• show if you are at higher risk of getting certain health conditions, including some types of cancer
• guide doctors in deciding what medicine or treatment to give you
• guide doctors on whether you're able to join a clinical trial

You need to be referred for genetic testing by a doctor. Talk to your hospital doctor about whether testing is right for you.

Genetic testing is free on the NHS if you are referred for it by a hospital doctor. You will only be referred if you have a suspected genetic health condition or if you have a particular type of cancer.

If you’re offered a genetic test, you may be referred to a genetic counsellor to help you think through what the test means for you and your family. A genetic counsellor can help you understand:

• the risks and benefits of you having a genetic test
• the potential results of your test and what they mean
• how your family members may be affected if the test shows a serious health condition runs in your family
• the risk of you and your partner passing on a health condition to your children
• your options if you have a child with an inherited health condition and you do not want your next child to inherit it

A genetic counsellor can also direct you to relevant patient support groups.

The impact on your family

You may want to consider how the results of a genetic test may affect you and others in your family. There’s also a chance that the test gives you information about your relatives that you or they may not have known before. For example, it may show that you were adopted or that your biological father is not who you thought they were. This is because the test can show that you do not share genes with your family members.

A genetic test is usually done using a sample of your blood or saliva.
If you’ve been referred for a genetic test because you have cancer, the test will be done on a sample of the tumour that has already been removed as part of your treatment. The sample of blood, saliva or body tissue is sent to a genetic testing laboratory to be analysed.
 

You’ll be told when to expect the results of your test. Depending on the reason for your test, it could be weeks or months. You may need further tests. The results from the test may show:

• you have a change in your genes which is known to cause a health condition
• you do not have a change in your genes which is known to cause a health condition
• it's not clear what the results mean for your health (but doctors may have a better understanding of the results in the future)
• after you get your results, you may be referred to a genetic counsellor to help you understand what they mean for you and your family.

Your genetic data includes your sample (blood, tissue or saliva), clinical information about your health condition and the results of your test. This data may be used in:
•    your individual care
•    planning to improve the health services you and others receive
•    research

Data from genetic testing is stored in a secure national database. Where necessary, information that can identify you, such as your name and address, is removed. Your data can only be accessed by approved staff.

If you have a genetic test on the NHS, it's not possible to stop your data being stored and shared. If you have already opted out of data from your health records being shared, this does not apply to your genetic test data.

The NHS is responsible for your genetic data. Find out more about the NHS’s responsibility
Find out more about how the NHS manages your data in the NHS England Privacy Notice
 

These links tell you about genetic testing in breast cancer. If you would like further information, please contact the Institute of Genetic Medicine at Centre for Life Telephone 0191 2418600 or email geneticcounsellorenquiries@nhs.net

Breast Cancer Now -Genetic testing for altered breast cancer genes

Macmillan Cancer Support -Family history, genes and cancer risk