A new genetic testing project will offer thousands of people with Westray and Whalsay ancestry the opportunity to be tested for specific BRCA gene variants linked to an increased risk of certain cancers.
What is the project?
This two-year project will begin in 2027 and offer testing to thousands of people with ancestry in Westray in Orkney and Whalsay in Shetland. It will identify people with specific BRCA gene variants who may have an increased risk of developing certain cancers.
Around 5,000 tests will be carried out across Orkney, Shetland, Grampian, Highland, Tayside, Lothian, and Greater Glasgow & Clyde NHS areas.
The testing programme will start in Orkney, before moving to Whalsay and the rest of Shetland, with an aim to roll out across mainland Scotland in 2028.
Anyone with Westray or Whalsay ancestry who is interested in accessing genetic testing should wait for advice on when this becomes available through their local health board.
Why is this project happening?
Right now, testing in Scotland is only available to people who have a known family connection to the BRCA gene variant or a family history of breast, ovarian and/or prostate cancer.
However, research that informed this work shows that two specific gene changes are more common in people with Westray or Whalsay ancestry, even with no known family history of cancer.
Identifying people with this gene change can help those who might be at increased risk of certain cancers access genetic counselling, screening and preventative care.
“This is an extraordinary example of what charitable donations from patients and families can make possible, and is truly collaborative work which has the potential to make a lasting difference for people across Scotland.”
What are BRCA gene variants?
There are over 3,000 known variants of the BRCA1 and BRCA2 genes which can increase cancer risk. Around one in 1,000 women across the UK have a BRCA1 variant, meaning they have an increased risk of developing breast or ovarian cancer. Men with BRCA2 variants have a higher risk of developing breast or prostate cancer.
The research this project builds on found that women in Orkney with the BRCA variant could be linked to one large family with origins in Westray. The variant affects one in 25-50 people with ancestral links to the island.
Who is behind this project?
The project will be funded by NHS charities across Scotland and Friends of ANCHOR, a cancer and haematology charity based in North-East Scotland. It will be led by researchers from the University of Aberdeen and the NHS North of Scotland Genetics Services.
“This project reflects our commitment to supporting earlier diagnosis, prevention and improved outcomes for people affected by cancer, and this programme will identify people at increased risk earlier and give them access to support and preventative care that could ultimately save lives.”
The information and statistics on this page are from NHS Grampian.