A saliva test for the Westray BRCA1 gene variant will be available to Scottish residents with a Westray grandparent for a two year trial period starting next year. Testing has been made possible due to financial support from Friends of ANCHOR and Scottish NHS Charities.

Why is the project being set up?

One in 100 people (1%) who have grandparents from Orkney have a BRCA1 gene variant that causes women a higher change of developing breast and/or ovarian cancer.

Professor Zosia Miedzybrodzka’s Orkney NHS Genetic Clinic team identified the same specific single variant in the BRCA1 gene repeatedly in women from Orkney with breast and/or ovarian cancer. She worked with Professor Jim Wilson’s ORCADES and VIKING studies to see how common this gene variant is and where it came from. They found that almost all the people with the gene variant have a Westray born grandparent. People with 1 or 2 Westray grandparents have a 1 in 50 chance of having the variant. It is present in 1 in 25 people with 3 or 4 Westray grandparents.

There is also a BRCA2 gene variant common in people descended from Whalsay in Shetland (see Whalsay FAQs section for more detail).

What does the BRCA1 gene do?

We have two copies of most of the genes in our body – one from our mother and one from our father. Most breast and ovarian cancers are caused by chance damage to both copies of one of a number of genes in a cell of the breast or ovary. However, some women inherit a variant in one copy of a gene in all of their cells. This increases the chances that both copies of one of those key genes get damaged and go on to cause breast or ovarian cancer. One of the most common of these predisposing genes is BRCA1. Around one in 1000 women across the UK have a BRCA1 gene variant that gives them a very high lifetime chance of developing breast cancer and ovarian cancer. There are thousands of different variants known in BRCA1 and most are uncommon.  

How are people with BRCA1 variants looked after?

Risk-reducing surgery, early breast screening including MRI, and lifestyle advice can all improve health for women with the gene variant. Men with the gene variant do not have a big increased chance of getting breast cancer, but can pass the gene variant onto their children. In some circumstances, the gene variant can also influence the care of breast, ovarian, and prostate cancer.

Who in Scotland can be tested by the NHS for the gene variant now (summer 2026)?

A test is currently available to people with Westray-born grandparents who: (1) know of a direct family connection to the gene; or (2) have had ovarian or breast cancer themselves.

Broadening the offer of testing

In 2023, the Westray Development Trust funded a trial run of testing for the BRCA1 variant for Westray residents. The testing worked very well and was popular. The community thought that the test should be made available to people with a Westray or Whalsay grandparent wherever they live. However, new funding to test elsewhere was needed.

What is the new funding?

Friends of ANCHOR and NHS Charities from across Scotland have clubbed together in a historic first to jointly fund this new pilot programme. Planning has started to make tests for the Westray and Whalsay BRCA gene variants available to Scottish residents with a Westray-born or Whalsay-born grandparent.

When will testing start?

The project is aiming to start testing in Orkney in spring 2027. It is hoped that testing can start in Whalsay, then the rest of Shetland in the autumn. Testing will be offered to residents of mainland Scotland in 2028.

Is this testing different from VIKING Genes?

This new Scotland-wide pilot program is an NHS test offered and run by the NHS Grampian Genetics team. Testing will be done by NHS staff following NHS procedures. Advice for people with the gene will be available from NHS Genetic Counsellors.

VIKING Genes is purely a research project. People who took part in the VIKING II project had the offer of the opportunity to ask for genetic results back. Everyone who signed up for results who was found to have either the Westray or the Whalsay BRCA gene variant were notified.

How will I find out when testing is starting?

Once testing is due to start, there will be announcements in the local press and the NHS health board communication channels.

Where can I find more information?

Information about cancer symptoms and how to reduce your chances of getting cancer is available from the NHS Inform website. People worried that they might have cancer should read the advice on NHS Inform and consult their GP.

More information on BRCA1 and BRCA2, and breast, ovarian, and prostate cancer in families is available via the NHS, MacMillan Cancer Support and Breast Cancer Now. Detailed information about eligibility for breast cancer assessments is available from Breast Cancer Now.

Friends of ANCHOR offers practical and emotional support to patients of the ANCHOR Unit at Aberdeen Royal Infirmary throughout their treatment. Full details of their wellbeing support can be found on the Friends of ANCHOR website. 

Clan Cancer Support provides free physical and emotional support for people of all ages and with all types of cancer from its network of wellbeing centres across the North-East, Moray, Orkney and Shetland. Clan also offers services to friends, family and colleagues of those with a diagnosis. More information on their support services can be found on Clan’s website.

 

 

Published: 11/08/2026 11:38