Inside the pioneering £1m 'Viking gene' project to screen thousands of Scottish islanders

Unique project aims to help islanders take preventative action

A major fundraising drive for a pioneering large-scale genetic screening programme has been launched in an attempt to help thousands of Scots discover whether they are at risk of developing a series of life-threatening conditions.

In what has been hailed as a significant step forward towards Scotland’s first ever community-focused preventative healthcare screening campaign, the appeal aims to provide people in Shetland with free access to leading genetic research so as to test for disease-causing variants that could cut their lives short.

Those living on parts of the archipelago have a seven-times higher risk of developing breast, ovarian and prostate cancer caused by so-called BRCA2 gene variants than the population on the Scottish mainland. It is hoped the screening programme will enable early preventative health interventions to either reduce the chances of disease occurring, or stop its progression.

Dr Shona Kerr and Professor Jim Flett Wilson picking plasma as part of their research for the Viking project. Picture: University of Edinburgh | University of Edinburgh

The Viking Genes Shetland initiative aims to provide 5,000 Shetlanders with the opportunity to take part in a free generic screening developed specifically for the islands.

Those volunteering will be advised of actionable genetic findings and, in time, the project will also identify those individuals who may not be affected themselves, but who carry an elevated risk of passing on certain genetic conditions to their children. They include the likes of cardiomyopathy, haemochromatosis, Batten disease and island-specific multiple sclerosis.

Health Secretary Neil Gray has asked to be kept informed about the progress of the community screening project and its implications for shaping future genomic medicine policy across Scotland, where several more high-risk population groups have been identified.

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Jim Flett Wilson, a professor of human genetics who leads the Viking Genes programme at the University of Edinburgh's Usher Institute, said: “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.

Those living on parts of the archipelago have a seven times higher risk of developing breast, ovarian and prostate cancer caused by so-called BRCA2 gene variants than the population on the Scottish mainland. Picture: Canva/Getty | Canva/Getty Images

“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.”

Community leaders in Shetland have formed a committee in an effort to raise £1 million towards the costs of the programme, which will test for 50 genetic variants found to be prevalent in the local population. Research shows one in 40 Shetlanders carry one of these variants.

Sandra Laurenson, chair of Viking Genes Shetland, said: “The voluntary group was formed following a presentation Prof Wilson gave in Lerwick last autumn. 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.

Those volunteering will be advised of actionable genetic findings. Picture: University of Edinburgh | University of Edinburgh

“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.”