Frequently Asked Questions for People of Whalsay Descent

A saliva test for the Whalsay BRCA2 gene variant will be available to Scottish residents with a Whalsay 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.

What do we know about BRCA2 and Whalsay ancestry?

Research done by the VIKING Genes study with the NHS Grampian Genetic Clinic found that 1 in 40 people who have four grandparents from Whalsay share a variant in the gene BRCA2. The variant increases the chance of developing breast, ovarian, and prostate cancers.

There is also a BRCA1 gene variant common in people descended from Westray in Orkney (see Westray FAQs section for more detail).

How does BRCA2 link to cancer?

Most breast, ovarian, and prostate cancers occur by chance damage to certain genes. However, some people inherit a variant in one copy of a particular gene that can increase their chance of developing breast, ovarian or prostate cancer. One of these cancer predisposing genes is BRCA2, another is BRCA1. Around one in 260 people across the UK have a BRCA1 or BRCA2 gene variant that gives them a higher lifetime chance of developing breast, ovarian, and other cancers. Not everyone with the variant gets cancer.

How are people with BRCA2 variants looked after?

Women with BRCA2 variants have a higher chance of getting breast and/or ovarian cancer. Risk-reducing surgery, early breast screening including MRI, and lifestyle advice can all improve health for women with the gene variant.  Men with BRCA2 variants have an increased chance of getting prostate cancer and also a small increased chance of breast cancer. Men with BRCA2 variants are offered blood tests to look for prostate cancer early. Many men with BRCA2 variants do not get cancer, but men and women with the gene variant can pass it onto their children. In some circumstances, the gene variant can also influence the care of breast, ovarian, and prostate cancer.

Who can be tested for the Whalsay BRCA2 gene variant right now?

A test is currently available to relatives of people with the known BRCA2 variant as standard NHS care. You can also request an NHS genetic risk assessment for testing if you have at least one Whalsay born grandparent AND: (1) have had ovarian, breast or prostate cancer; OR (2) have a parent, child, sibling, nephew, niece, uncle, aunt, or grandparent who has had ovarian, breast, or prostate cancer.

How can I access a test or a risk assessment at present (summer 2026)?

If a blood relative has been found to have the Whalsay BRCA2 gene variant, you can ask your GP to refer you to your local NHS Genetic Clinic to consider testing. Residents in the North of Scotland who have received a letter from a relative suggesting they have a test can contact the genetics teams directly following the instructions on the letter. Please note that GPs will not be able to directly assist with gene testing and any questions about this research.

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 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 variants 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 11:50