News / Groundbreaking genetic testing scheme could be rolled out to 5,000 Shetlanders
PLANS have been unveiled for a groundbreaking genetic screening programme for Shetland – and a £1 million fundraising campaign to cover its costs.
The Viking Genes programme, which would be the first community genetic screening scheme in Scotland, aims to provide 5,000 Shetlanders with the opportunity to take part.
It will build on work already carried out in Shetland by the University of Edinburgh’s Viking Genes project and will look to identify anyone from the island communities with a higher genetic risk of developing a number of life-threatening conditions, with the focus on prevention.
A group of local community leaders have formed a voluntary committee and hope to raise £1 million for Shetlanders to participate in a free screening programme that will test for 50 genetic variants found to be prevalent in the isles.
Research shows 1 in 40 of Shetlanders carry one of these variants. These include BRCA2 causing breast, ovarian and prostate cancer and KCNH2 causing fatal heart rhythms.
While £1 million is the target goal, screening will be able to start before that figure is reached.
Those in attendance at launch event at Mareel on Wednesday morning were told that the total cost of the project, which could span through to 2029, sits at £1.8 million. However, University of Edinburgh’s contribution amounts to £800,000 – leaving £1 million to go.
Requests will be made to funding bodies but community fundraising will form a key backbone of the project – perhaps like the MRI scanner appeal of recent years.
All of the 50 genetic variants are termed “actionable findings”, meaning that they can be treated through NHS care pathways to reduce the chance of disease occurring, or to stop disease progression, helping people stay healthy and in some cases save lives.
Volunteers in the programme will be notified of their genetic findings and be advised on the appropriate NHS pathway of care.
The screening panel will be designed to target the most important gene variants from the analysis of existing Viking Genes data.
Then all interested people over the age of 16, from anywhere in Shetland, will be able to register and consent to participate in the screening. They will receive a DNA saliva collection kit by post to return for screening.
One major finding from Viking Genes came last year when it was estimated that one in 40 people with Whalsay family heritage are likely to have a variant of a gene associated with a higher risk of cancer.
The new screening project will in time identify those individuals who may not be affected themselves, but who carry an elevated risk of passing on certain genetic conditions to their children.
The Viking Genes Shetland community screening project is described as a “unique collaboration” between the Shetland community and Professor Jim Flett Wilson who leads the Viking Genes programme at the University of Edinburgh’s Usher Institute.
The Viking Genes Shetland committee is chaired by Sandra Laurenson OBE, a former chief executive of Lerwick Port Authority. “The voluntary group was formed following a presentation Prof Wilson gave in Lerwick last autumn,” she explained.
“It was an eye-opener for many of us learning of the number of conditions that stem from a genetic variant, and interesting how it traced back to specific island communities.
“The project builds on the previous Viking Genes work where over 3,000 Shetlanders participated and offers an opportunity for more to benefit from those research findings.
“It became evident that there is a growing impetus for more screening and the volunteer stories are testament to the life-changing benefits for volunteers and their families.
“Already the Viking Genes Fund has been really well supported by a number of fantastic events by people in the community and by private donations.
“We hope to be able to assist the project with applying to some of the institutional bodies both within and outside of Shetland to attract funding.
“Today, we are encouraging more community fundraising as this is such an important part to make the Shetland Community Screening Project a reality.”
She said in effect it would cost £200 per screening, with around 65 per cent of the total project cost attributed to salaries.
While a few thousand Shetland people have already been involved in previous Viking Genes work, Laurenson said there were a lot of people asking “how can we get tested?”.
She said the 3,000 people who have already been checked through Viking Genes do not need to be screened again.
Professor Jim Flett Wilson added: “Preventative genetic healthcare like the Viking Genes Shetland Community Screening Project will directly impact the health of Shetlanders, it’s likely to save lives and keep many more people healthy and contributing to the community rather than not realising they were at risk and then suffering from advanced stages of disease later in their lives.
“Shetlanders have a much higher risk of certain genetic diseases, so there’s a clear need and we are trying to help.
“Most people we screen will find they have no elevated health risks and have that peace of mind, but we’ve already demonstrated that for the expected 100 individuals we find with elevated risks, it can be life-changing and life extending.
“I’m very grateful to the courageous volunteers who have stepped forward to share their very personal stories of the positive health outcomes they experienced following our earlier return of their screen results – it really brings home the impact.”
Speaking at Wednesday’s launch event, the professor hailed the proposed programme as “transformational”.
He highlighted how there is free genetic testing for Jewish people in England, but nothing of the sort in Scotland – with the Shetland programme in line to be the first of its kind in the country.
As such, the Scottish health minister has asked to be kept informed about the progress of the project and its findings for shaping future genomic medicine policy across Scotland, where several more high-risk population groups have been identified.
It could take around one year to lay the “ground work” for the project before screening actually commences.
Laurenson also said the team respected the choice of folk who do not want to get tested.
The Viking Genes project began in 2003, initially focusing on Orkney before looking at Shetland from 2013 onwards.
A total of 10,000 adult volunteers have been involved in the project to date.
At Wednesday’s event Hollywood actress Angelina Jolie also happened to get a mention, with Professor Wilson highlighting how she had preventative surgery in the 2010s after learning she had the BRCA1 gene mutation that raised her risk of cancer.
He said she made a “huge difference” by choosing to share her own experience with BRCA – helping to raise awareness across the world.
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