FAQs

Traveller Genes is a research study looking at the genetics and health of volunteers who have at least two grandparents who are or were Travellers. This includes Scottish Travellers, Irish Travellers, Romanichal or Romany, or Welsh Kale. The aims of Traveller Genes are to:

• Identify the genetic origins and relationships of the Scottish Traveller community e.g. Highland Travellers, Lowland Travellers, Borders Romanichal Travellers
• Work out how Scottish Travellers relate to each other, to the Irish Travellers and English Gypsies, as well as the “settled” Scottish and neighbouring populations
• Understand overall patterns of health and disease, and their genetic risk factors, in the Traveller community.

Learn more in the link below.

What's Traveller Genes?

The Scottish Travellers, Irish Travellers, and Romanichal or Romany populations of the British Isles and Ireland are traditionally nomadic communities. They were socially isolated from the settled populations until recently. Some genetic studies have been carried out, but Scottish Travellers in particular have not yet been involved in such studies. We want to change that. Traveller Genes will use genetic analysis to provide information on the origins of these communities and their relationships with each other and with the settled populations among whom they live, and others worldwide. We aim to recruit around 200-400 people.

Traveller Genes is led by Professor Jim Wilson at the University of Edinburgh and managed by the Traveller Genes team. 

For more information about the team visit:

Meet the team

Scottish Travellers are a recognised ethnic group and Gypsy/Traveller was included in the 2011 census as an ethnicity. Traveller Genes will have no impact on this recognition.

Traveller Genes is not a eugenics project. We oppose eugenics as unscientific and racially biased.

Our study aims to learn more about the origins of various Traveller communities in Scotland. It was requested by members of this community and is being carried out with their agreement and input.

We, and the members of the community who approached us, believe that without any health representation the Scottish Traveller communities may lose out in modern medicine. There could be a particular loss through the benefits genomic medicine can bring. Without research into Traveller communities, there could be further health disparities in the future.

Traveller Genes has been reviewed and approved by the London-London Bridge Research Ethics Committee. It has been sponsored by the University of Edinburgh, through their Academic and Clinical Central Office for Research and Development.

Any personal details will be stored in a secure location and kept separate from study data. Study data will be stored in secure buildings, using a unique anonymous identification (ID) code. All data will be kept in a password-protected database and linked by your unique ID code. 

We plan to keep data and continue to track health in those who have taken part for at least 10 years. We will apply for data usage renewal, after this 10 year period, if we still believe it can be used in research.

The Traveller Genes team is based at The University of Edinburgh, who’ll be the legal owner of the data collected. In practice, Traveller Genes will manage the data, maintaining and building the public good. If you take part, you will not own any data collected on you.

Traveller Genes has security in place to ensure anonymity and to protect the information we collect. We'll always ensure that identifying data (e.g. name, address, date of birth) are kept separate from all other information. Those involved are fully trained to maintain your confidentiality.

Researchers who analyse the data will not be able to identify any one person. Study data will be stored carefully in secure buildings, using a unique anonymous ID code. This code allows researchers to access an anonymous copy of the information they need. They will not be able to use your ID to identify you.

Our research has been reviewed by an independent group of people, called a Research Ethics Committee. They’re here to protect your safety, rights, wellbeing and dignity. This project was reviewed and given a favourable opinion by the London Bridge Research Ethics Committee.

If the project is still running and you have not withdrawn your data before you die, we’ll retain it and continue to maintain confidentiality and security.

Your anonymised information will only be used by researchers who have relevant scientific and ethical approval for research. This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests. 

We will not give access to the following:

• Insurance companies
• Current or future employers
• Police (unless requested to do so by court order)

The Traveller Genes access committee will have authority over access and use of project data. We have a clear management structure and all studies are covered by the correct ethical approvals. All users will only be able to access anonymous information and it will be held to the same high scientific and ethical standards.

In addition, any research conducted will need to be supported by our Traveller Genes participant panel, who help to represent the Traveller community in our project.

Yes but your information will only be used by researchers who have relevant scientific and ethical approval for research. This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests.

You’re providing your data as a gift. You won’t receive any payment for your contribution. The University of Edinburgh and Traveller Genes operate on a non-profit basis, meaning we won’t sell your data.

If you would like to complain about our handling of your data, you can contact the University’s Data Protection Officer via email at dpo@ed.ac.uk or write to: 

Data Protection Officer, Governance and Strategic Planning, The University of Edinburgh, Old College Edinburgh EH8 9YL Scotland

It will take time and work to understand the genetics of volunteers in Traveller Genes. So, it may take a while for research results to be seen. However, research is likely to be published and you'll see all our latest updates on the website, in social media or via newsletters we send you, if you take part.

Due to the nature of this study, we won't be feeding back information to you about your own data. However, we will share our publications and reports on this website. It may take some time for these papers to be published though. We'll also update our website with any information on our progress.

Unfortunately, as with most charity and public sector research, people who take part will not be paid.

Proof of paternity is a sensitive issue. Paternity testing can identify relationships between people from their genes. Although we welcome people from the same family, we will not return details about the family relationships of volunteers. No requests for this type of analysis will be considered. If you need paternity testing, there are certified organisations in the UK that you can approach. 

In order for you to receive any information regarding our projects, it’s essential that we hold your up to date information. Please email us at travellergenes@ed.ac.uk to update this information.

If you haven't heard from us, when you expected to, you can reach us using the details on the webpage below:

Contact us

It’s important, before you join the study, that you discuss any concerns you have with a member of the study team. Our research is more valuable if few people choose to withdraw from the study. However, you can withdraw at any time without giving a reason. 

To withdraw you can contact us and let us know what type of withdrawal you would like to have:

• "No further contact": This means we’d no longer contact you with study updates or requests to join future studies. However, we’d still have permission from you to use the data  you previously provided. We will also follow this guideline if you lose capacity to consent.
• "No further use": In addition to ‘’no further contact,’’ we’d no longer make your data available for research. Please note, we won’t be able to remove results from research already performed or those currently being performed. We’ll ensure that your data are no longer available for future research.

Details on how to contact us can be found in the link below:

Contact us

If you would like to speak to someone about the study who is not part of the research team, please contact Prof. Gianpiero Cavelleri on 00 353 1 402 2146 or email gcavalleri@rcsi.ie

If, after discussing any issues with the research team, you wish to make a formal complaint about the study, please contact the University of Edinburgh’s Research Governance team via email at: researchgovernance@ed.ac.uk

It’s important to us that you have all the information you need before you join the study. If you can’t find the answer to your query here, you can contact us. Details can be found in the link below:

Contact Us