A study looking at giving information about genetic testing online (BRCA-DIRECT)

Cancer type:

Breast cancer

Status:

Results

Phase:

Other

This study compared two different ways of giving information about genetic testing. It looked at giving information online and in person.

It was open to women who had been diagnosed with breast cancer and were being seen at either the:

Royal Marsden NHS Foundation Trust or
Manchester University NHS Foundation Trust

The study was supported by Cancer Research UK. It was open for people to join between 2021 and 2022. The team published the results in 2024.

More about this trial

Inheriting a genetic change can increase someone’s risk of developing breast cancer. You may hear these changes called genetic variants.

People who may have a genetic change can be referred to a genetics clinic for tests to find out for sure. Here, they usually see a specialist genetic counsellor before having the test. The counsellor explains the test and the possible results.

When the test results come back, they speak to the genetic counsellor again. This can be either in person or on the phone. The counsellor explains the results and what they mean for the person and their family.

There are a limited number of genetic counsellors in the NHS. Researchers wanted to see if having information online, rather than speaking to a counsellor, would be as good. They hoped this would mean more people can have a genetic test.

Summary of results

A total of 1,140 people agreed to take part in this study. They were put into 1 of 2 groups at random:

569 people had their information online
571 people had their information from a genetic counsellor

Of these, 1,001 people decided to have a genetic test:

515 out of 569 people (91%) who had their information online
486 out of 571 people (85%) who had their information from a counsellor

Everyone taking part could call the telephone hotline if they wanted to. This was used by:

90 out of 569 people (16%) who had their information online
111 out of 571 people (20%) who had their information from a counsellor

The team also looked at people’s:

knowledge about genetic testing
anxiety levels
satisfaction with the information they were given

The results were similar for the two groups for all of these.

Conclusion
The team concluded that online information with telephone helpline support could be a useful alternative to speaking to a genetic counsellor. This is for people with breast cancer who have been referred to a genetics clinic for testing.

More detailed information
There is more information about this research in the reference below.

BRCA-DIRECT digital pathway for diagnostic germline genetic testing within a UK breast oncology setting: a randomised, non-inferiority trial
B. Torr and others
British Journal of Cancer, 2024. Volume 131, pages 1506 - 1515.

Please note, the information we link to here is not in plain English. It has been written for healthcare professionals and researchers.

Where this information comes from
We have based this summary on the information in the article above. This has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. We have not analysed the data ourselves. As far as we are aware, the link above is active and the article is free and available to view.