Funding needed to expand testing for cancer gene linked with Orkney

People with Orcadian heritage are ten times more likely to have the BRCA1 gene that causes breast and ovarian cancer.

It’s hoped testing for a cancer-causing gene can be expanded following a successful pilot scheme on the Island of Westray in Orkney.

Since July, a fifth of residents have been tested for the BRCA1 gene, which causes breast and ovarian cancer, after scientists found those with an ancestral link to the isle were ten times more likely to have it.

Scientists delivered the results to Orkney residents at a meeting earlier last week.

Professor Zosia Miedzybrodzka from the University of Aberdeen said: “This has really showed the way for the rest of Scotland and beyond that it’s a good thing to find out about cancer-causing genes.

“A fifth of the Westray population came forward to be tested, and between them and those who we spoke to in March, more than 36 people have benefitted from additional support and testing.”

Testing began in the summer, with women and men being offered a “spit test” to look for the BRCA1 mutation.

These samples were then sent to Aberdeen University to be screened, with the option of receiving additional counselling and screening if abnormalities were found.

Marian Groat was one of 93 people who wanted to be tested because of her family history.

Community testing took place on the Orkney island of Westray.

She said: “When the news initially broke, I fitted a lot of the descriptions, and I had a lot of cancer in the family so I was almost positive I had it.”

Since her cousin had the gene, Marian and her family was offered additional screening.

She added: “I was getting quite anxious at this point, but my test results were negative.

“I still think you’re better to be informed, so you can be more vigilant and to take every possible chance to check.”

The pilot was funded by the Westray Development Trust, who say the community’s response was key to its success.

Gina Rendall, the operations manager at the charity, said: “It’s so important that this was done locally, some people can’t or won’t go off the island for a test because of transport.

“It also takes the scariness out of getting this information, people here trust their local GP.”

But rolling out the programme to others who may have the gene outside of Westray relies on more cash being found.

Meghan McEwen, chair of the NHS Orkney board, said: “We support anything that will help our community stay healthy and that would require more funding, but those conversations are well underway.”

Cancer Charity Clan have been supporting those affected and says testing needs to be rolled out further.

Karen Scott, who works in the charity’s Kirkwall office, said: “Westray folk, like other Orcadians, have travelled, so if it could be rolled out to the rest in Orkney, that would be fantastic and if it could then go Scotland-wide, than that would be even better.”

If funding is found, it’s thought testing would be rolled out in geographical areas.

Professor Miedzybrodzka explained: “I’d like to see if we can make this test available to those across Scotland, with a Westray link, hopefully in the next couple of years,

“My suggestion is that we’d have to do it through postcodes or GP areas and roll it out area by area.”

NHS Grampian genetics clinic is running a helpline for queries about the gene variant linked to breast and ovarian cancer for those who have grandparents from Orkney.

The number to call for BRCA 1 testing is 01224 553940. Email enquiries can be directed to gram.orkBRCAgene@nhs.scot.

GPs will not be able to assist with gene testing and any questions about this research and next steps should be directed to the helpline.

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