A study looking at family communication about breast cancer that runs in the family

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

Cancer type:

Breast cancer





This study is looking at how children learn about and come to understand the risks linked to having a faulty BRCA gene in their family, and the effect sharing this information has on children and parents.

We know that if you carry a faulty BRCA gene in your genetic Open a glossary item makeup, you have a greater risk of developing breast cancer. Parents who carry this faulty gene often have concerns about explaining the risk to their children. Many parents worry about when would be the best time to talk to their children, if at all. This study will talk to families and health professionals involved with this issue. The aim of this pilot study is to carry out interviews to explore how

  • Children learn about and understand hereditary breast cancer risks
  • This information might affect their health and life choices
  • Parents are affected by sharing this information with their children

And to use a questionnaire with related health professionals to

  • Find out what advice genetic counsellors give to parents about talking to their children
  • See which genetics units can help with a full study following on from this pilot study

The team hope to be able to offer parents and health professionals information and advice about how children learn, and the type of reactions parents might expect. The results from the study will be used to help health professionals support families in the future who are dealing with hereditary Open a glossary item breast cancer.

Who can enter

People taking part in this study will be recruited by staff involved in genetic counselling at the West Midlands Cancer Genetics Unit.  

You may be able to enter this study if your family has a known change (fault) to the BRCA gene, with one parent having a strong family history, or having tested positive for the gene.  

You cannot enter this study if you are a child under the age of 4, or if your parents have not talked to you about hereditary breast cancer risk.

If, as parents of a family who may be able to take part, you are not willing to allow interviews with children who are old enough to take part the research team will only interview you. If you have a child of 15 or younger, you will need to give permission for the research team to interview them. Once the team have your permission, they will then ask the child if they are happy to take part.

The team think that children and young people should only take part in this study if parents feel confident that they and their children are able to openly discuss hereditary breast cancer with each other.

Trial design

This is a pilot study. It will recruit about 6 to 10 families. If successful, the pilot work will help a much larger study. This larger study will look at the outcomes for children and young people of knowing about hereditary breast cancer risk.  And compare them with those of children not given information until the age of 18.

If you agree to take part, trained researchers will interview you and your children. They will encourage your children to use drawings and pictures, if they want to, to explore their experiences. You can choose to have the interview as a family group, or as individuals.

The interviews will last between 30 to 90 minutes, and be recorded using a voice recorder.  

Health professionals from the clinical genetics units and cancer units taking part will complete a short questionnaire.

Hospital visits

Wherever possible, the team will interview families in their homes. But if you prefer to travel to the university or elsewhere for the interviews, the team will pay your travel costs.

Side effects

The interviews will cover sensitive information asking you and your children about your experiences of talking and learning about inherited breast cancer. The questions are designed to find out about your children’s experiences without giving them any new information. But some children may raise questions with the researchers that they had not spoken about with you before. When you contact the team to confirm that you are interested in taking part, they will discuss with you in more detail how they will handle this if it happens.

It is unlikely that you will have any problems as a result of taking part. If the interview raises any questions, the researchers would not be able to help you with any queries related to your particular situation. But they will recommend that you raise these with your family doctor, clinical genetics specialist (geneticist) or genetic counsellor.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Alison Metcalfe

Supported by

Breast Cancer Campaign
National Institute for Health Research Cancer Research Network (NCRN)

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

Oracle 8414

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Deborah wanted to help other breast cancer patients in the future

A picture of Deborah

“Deborah agreed to take part in a trial as she was keen to help other cancer patients in the future. "If taking part in a trial means others might be helped then I’m very happy with that."

Last reviewed:

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