Making a decision about genetic testing

A genetic test result can be life-changing for some people. The decision to have the test is extremely personal, complex and can be difficult.

People often take the test for their own benefit – for example to help them make informed decisions about whether to have risk-reducing surgery, take risk-reducing drugs, attend breast screening from an earlier age or take part in any studies or clinical trials.

The other main reason for taking a genetic test is to help inform the health and healthcare decisions of children and other relatives.

In some cases, people decide against genetic testing as they would rather not know whether they’re at increased risk.

Having genetic testing can give you a lot to consider, which is why everyone having NHS genetic testing is offered genetic counselling.

Possible advantages of having a test
  • Finding the faulty gene (mutation) linked to breast cancer that runs in a family allows blood relatives to find out their own risk too.
  • Finding out if you or a family member carries a faulty gene may make future decision-making about managing your risk of breast cancer easier.
  • It could reduce any stress or anxiety that comes from not knowing whether or not you carry a faulty gene.
    • It might confirm you’re not at increased risk.
    • It might confirm you’re at increased risk and help you consider accessing services to help you manage your risk
  • It is thought that some treatments may work better in cancers that contain certain gene faults. If you do develop breast cancer in the future, then already knowing of any genetic faults you carry may mean you can begin appropriate treatment sooner tailored to your breast cancer, and you may be able to participate in relevant clinical trials if you choose.
  • If you are found to have a BRCA gene fault and are thinking of starting a family, a special type of in vitro fertilisation (IVF) is available to screen for embryos without the gene fault
Possible disadvantages of having a test
  • Getting genetic test results can lead to long-lasting emotions, for example finding out that you carry a faulty gene could lead to you feeling more anxious about your breast cancer risk.
  • The results of some genetic tests are inconclusive, which means that no gene fault known to be linked to breast cancer was present in the person’s DNA. In these situations, it is often not possible to confirm which people in the family definitely do or do not have an increased risk of breast cancer.
  • However, each person’s risk can still be estimated based on patterns of cancer in the family.
    If you have breast cancer and genetic testing shows you have a faulty gene, this could in uncommon cases affect your future insurance policies, as well as those of your family members.

Even if you decide not to take a test, the majority of risk management options should still be available to you.

Related information
Get personalised information about the likely steps of genetic testing for you and your family

Read more

Get advice on talking to relatives.

Read more

Insurance companies can ask for your and your family’s medical history.

Find out more

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