Risk of rare genetic diseases is higher for some Scottish Travellers, study says

The first major genetic study of Scottish Travellers has found that some are at significantly higher risk of rare inherited diseases than other Scots.

While most in the community are not affected, a small number are at risk of five uncommon conditions which include a form of kidney disease and a blood disorder.

Scientists from the University of Edinburgh said community-led genetic screening was needed, along with greater awareness amongst clinicians.

Travellers who took part in the study said further testing for diseases would need to be done respectfully alongside the community.

Scottish Traveller Samantha Whyte Donaldson had asked the University of Edinburgh to use DNA analysis to look into the origins of the community.

Experts collected saliva samples of 125 people with at least two Traveller grandparents between 2021 and 2022.

They found that Scottish Travellers have a 2,500 times higher risk of one particular genetic mutation which can cause a rare kidney disorder.

However scientists stressed while there was a higher risk, the rare diseases were still very uncommon in the community.

Jim Flett Wilson, Professor of Human Genetics at the University of Edinburgh's Usher Institute, lead the study.

He said this type of research was important to address longstanding health inequalities.

"Every population I've looked at has its own set of genetic risks," he said.

He has studied a number of small communities, finding a higher risk of some cancers in Orkney and Shetland.

He hopes that by understanding more about increased risks to Scottish Travellers, bespoke community testing could be developed and better healthcare could be provided.

Samantha said she thought further research could be beneficial as long as the community were part of it.

"Unfortunately Scottish travellers do have a shorter life expectancy compared to the settled population," she said.

"Prejudice and discrimination is one part of it but health disparities are another, so I'm hoping the Scottish government sees this and thinks: 'What can we do in terms of things like screening programmes'?"

After centuries of discrimination and exclusion, the Scottish Travelling community have been hesitant to engage with health services or participate in scientific studies.

A total of 3,343 people identified as Gypsy or Traveller in Scotland in the 2022 census. While some continue to travel seasonally, most live in permanent housing or sites across Scotland.

Last year, First Minister John Swinney apologised for "Tinker Experiments" which saw authorities forcibly try to settle people from the 1940s to 1980s and took children away from parents.

Samantha's mum was one of those taken into care as a child and said she was called "horrible racist things".

"They really drummed into her that her people were scum and she grew up very much assimilated," she said.

Lack of data has led to major gaps in understanding the community and incorrect assumptions that Scottish Travellers descended from Romani or Pictish populations.

The study revealed deep ancestral roots in Scotland.

Two major genetic subgroups were identified, likely reflecting Highland and Lowland ancestry.

Jess Smith, 78, an elder in the community and a storyteller of Traveller history in Scotland, was delighted by the findings.

"I don't really want to be anything other than Scottish and I will stand up in any platform and say I'm a Scot," Jess said.

"You've only got to look at the Tartan Army. Is that not people proud of their roots that they belong to?

"Well, we all belong to that now, the travellers as well."