The impact of a variant detected (found) result on your family

Your siblings

Your full siblings (brothers and sisters) who have the same mum and dad as you, have a 50 per cent (1 in 2) chance of also carrying the gene variant. They will be offered cascade testing.

Your half-siblings

The chance of carrying the gene variant for your half-siblings may be less than 50 per cent (1 in 2) depending on their family history. But they can still ask for genetic testing.

Your children

Your children have a 50 per cent (1 in 2) chance of inheriting the gene variant. They can access genetic testing at age 18 or over and they'll be offered cascade testing.

How do I tell my family and how might they feel? 

If your family know that you’re having genetic testing, telling them about the results may happen naturally. 

It may feel like a difficult conversation to have depending on how you’re feeling physically and emotionally. You may struggle with the thought of potentially passing on a gene variant, especially to your children. You may find that talking to your partner or a friend helpful. You can also speak to your treatment team or clinical genetics team. 

Your relatives may wonder whether they have an increased cancer risk. Knowing about a gene variant means they will be able to have a genetic test. This can help them to take preventative action if they’re at increased risk of cancer.

Many people choose to have genetic testing. This is because they would rather be aware of any increased risk of cancer. They may be offered regular tests or surgery to manage their increased risk.

But for some people, knowing about a possible increased cancer risk may cause anxiety. They may be worried about their children, or about the impact on having future children of their own. Others may be worried about the possible impact on their work or insurance. 

You may have relatives that don’t want to hear about the news of the gene variant you carry. You may also have relatives that you’re not in contact with. If this is the case, your local clinical genetics service will talk to you about what to do. If you think it will be helpful, they can write an open letter that you can send to relatives. It will explain about the gene variant and the genetic testing available to them. 

Whether and when your relatives decide to have genetic testing to find out if they have an inherited gene variant is up to them. Some people adjust to the news quicker than others. Whatever they decide, you will have given them information that won’t have been available to them otherwise.

Telling your children about a gene variant

Many parents find talking to their children about a gene variant in their family difficult. You may want to protect your children. You may not know when the best time to tell them is or how to tell them. It’s normal to feel a sense of guilt that your own children may be at a higher risk of developing cancer.

It helps children and young people to cope better when they know what's happening to their family members. There’s no right age to tell children about a gene variant. But try to be open and honest with them and not keep information secret. Older children may not ask direct questions so you may need to start the conversation with them.

How it felt for me: Speaking to children

“The advice from the geneticist was to be open with my young daughter about the gene variant. She said to explain that it’s good that she can be tested for the gene variant when she’s older. If there’s a risk of her developing cancer, she’ll be closely monitored. I think that was good advice. Over the years we’ve talked about it a little bit. Now she’s 18, we’ll gradually have conversations about her having genetic testing. I’ve tried my best to reassure her as much as possible.

I’m not going to push my children to get tested as soon as they turn 18. I’m just going to keep life as normal as we can and get on with things. My daughter’s aware of her need to be tested at some point. My younger son probably not so much, so I do need to talk to him at some point.” Sarah

Genetic testing for your children

Your children won’t be offered genetic testing for a gene variant that increases their risk of developing cancer until they reach the age of 18. 

This is because anyone having a genetic test must be old enough to decide themselves if they want to have it. 

When they are 18 years old or over, your children can take your test results to their GP to be referred for genetic counselling and genetic testing. It’s important that they make their own informed choice about whether to be tested when they are old enough.