The case for genetic screening in Shetland

Shetland Community Screening Project 2025-2029

Our Viking Genes project has revealed that Shetlanders have a much higher chance of carrying a number of potentially deadly disease-causing genetic variants than the general UK mainland population, for example BRCA2 causing breast, ovarian and prostate cancer and KCNH2 causing fatal heart rhythms. For specific genes that are linked to particular life-threatening health conditions, the risk can be as much as hundreds of times higher for Shetlanders.   

For all of these diseases there are medical treatments or life-style changes that can dramatically reduce the likelihood of the disease occurring or progressing, allowing people to stay healthy for longer and enjoy full active lives in their community.  But to be able to take action, individuals must first know if they carry any of the genetic variants that cause heightened risks of disease. Younger individuals who are screened may also be able to prevent some of these conditions being passed on to the future generations of islanders, reducing the high prevalence of some serious childhood diseases in Shetland, like Batten disease and Cohen syndrome.

Population-wide genetic screening is slowly becoming more available within the NHS, with NHS Scotland recently recognising the critical contribution it can make to moving towards a preventative healthcare model of keeping people healthy. It is widely understood that screening and early intervention saves many lives and is cost effective too.  Sir Chris Hoy has recently spearheaded a very personal and public campaign to increase public access to prostate cancer screening more widely and at an earlier age to prevent avoidable deaths. 

The largest preventative screening programme in the UK is for breast cancer, which is well established and estimated to have saved 1300 deaths per year, with access to screening typically limited to older adults or those who have a family history of a particular disease. 

To date in the UK, only one high risk population group, the Jewish population has been able to access a tailored population-wide genetic screen that tests for about 50 disease variants which are more common in their community. The J-netics programme, which is open to all individuals with one or more Jewish grandparents is expected to save hundreds of lives and is aiming to greatly reduce a number of children born with genetic diseases. The J-netics programme came about through the tireless work of academics and the Jewish community acting together to evidence the need, to raise funds for screening implementation and lobby to change health policy. 

The Shetland community has a similar need, given the high frequencies of certain disease variants uncovered in Viking Genes. I have lobbied the Scottish Government to make this available through NHS Scotland but the state of public finances makes this highly unlikely in the foreseeable future. 

This is why, in partnership with the people of Shetland, we are launching a public funding campaign to bring population-wide genetic screening for all the disease-causing variants that are so common across Shetland. Together, we aim to deliver Shetlanders with the best genomic healthcare screening possible, to make preventative medicine a reality in Shetland and to change the future health outcomes of the current generation and future generations of islanders. 

What impact will this have for health in Shetland?

The project will provide a unique opportunity to advance the health and wellbeing of today’s island population, while protecting future generations. 

It will move Shetland to the forefront of preventative medicine within the UK. This will result in improved health of the community, save individual lives across Shetland, avoid or prevent debilitating later stage conditions, and increase the quality of life and health for many Shetlanders.

For the future, we aim to be able to move on to the devastating inherited diseases such as Cohen syndrome, Batten disease, cystic fibrosis, Wilson disease, glutaric acidaemia, Usher syndrome and others, many of which are incurable. Within two years we hope to start returning information to carriers of these genetic variants.

By screening adults of all ages, including young Shetlanders who have not yet had children, it will be possible to identify couples who have the greatest risk of having a baby born with a potentially fatal condition, and to take steps to reduce that risk through medical interventions. 

Shetland will be a pathfinder and role model for Scotland and the rest of the UK. Our population-wide screen will enhance the equity of healthcare provision to islanders, and deliver a practical and ethical exemplar for other regions to emulate with those communities who have elevated genetic health risks.  

How can I donate or fund-raise for the Shetland Community Screening Project?

With the endorsement of Prof Wilson, a committee of local volunteers will support the project and help raise the £1 Million required. Already, a number of privately organised local fund-raisers have set Viking Genes Fund off to a great start with many individuals also donating. We are currently working to secure enough funds to enable project delivery staff to be appointed for the expected 3-year term that will safe-guard the overall delivery of the project.

You can donate online via our secure online donation page: Viking Genes Fund, or visit our Donate page to find out all the different ways to get your donation to us.

Visit Support Viking Genes. Here you can find everything you need to start raising funds for Viking Genes. Such as our Resources page, which has many useful things to download such as our fund-raising pack, donation forms, and other essentials you need. Alongside our fund-raising officer, Kerry Mackay of the University of Edinburgh's Development and Alumni Team, we will help fund-raisers every step of the way. 

If you can help in any way and want to get in touch, please email viking@ed.ac.uk. We are very grateful for any contribution or support you can provide.