Grow-DCD Genetics Research - Judith Gentle

Researcher Dr Judith Gentle announced back in autumn that she is leading a new study aimed at discovering the genetic influences of dyspraxia/DCD. Genetic research in other neurodivergent conditions, such as autism, has often raised ethical concerns. For example, organisations like Autism Speaks have focused on identifying the genetics behind autism with the stated aim of preventing it in future generations, a stance many critics argue promotes eugenics rather than acceptance. 

Many voices across the world condemn research that plays a role in eugenics and instead advocate for research that aims to help adapt our modern world to be inclusive and supportive for all neurodivergent people. With this context in mind, we spoke to Judith about the goals of her study and how she and her team are ensuring their work cannot be misused to cause harm.

COULD YOU START BY TELLING US A LITTLE ABOUT YOURSELF AND YOUR BACKGROUND, BOTH PERSONALLY AND PROFESSIONALLY, AND HOW YOU CAME TO WORK IN THE FIELD OF DYSPRAXIA/DCD RESEARCH?

My journey into DCD research started with the birth of my son 26 years ago and the sad realisation that, whilst there were many health practitioners willing to provide support for him (he is at the most severe end of the DCD spectrum), there was little knowledge in the public domain for me to try and understand why he was late in meeting all his developmental milestones, why he kept bumping his head when he started to crawl, why he could walk (actually he ran everywhere) but not ride a bike, why he didn’t talk until he was nearly 5 years old (he has made up for it now though!). So, I naively thought I would study for a psychology degree, and this would help me understand all about it. However, again I was met with very few lecturers with any knowledge of DCD. So, I continued studying and working with experts in DCD until reaching a level where I can conduct my own research. Finally, in 2015 after studying for 10 years, I started at the University of Surrey as a lecturer and, alongside my teaching responsibilities, I can now conduct my own research in the area.  

WHAT’S THE NEW GENETICS PROJECT ABOUT?

We are currently collecting data for a study to understand whether genetic influences that play a role in early motor development are relevant to DCD. We are fortunate to receive funding from the Waterloo Foundation.

The study is called GROW-DCD (Genetic Research Of Walking and Dyspraxia/DCD). We know that DCD is partly heritable, but we do not yet know the specific genes involved. Although this project is at an early stage project, we hope eventually to be able to help with the identification of those who are likely to develop DCD. There is not just one “DCD gene”, there will be many genes involved that influence DCD together with environmental influences.

COULD EARLIER IDENTIFICATION REDUCE LONG-TERM CONSEQUENCES?

Earlier recognition means earlier support, at school, in clinics, and at home. That can improve confidence, reduce frustration and anxiety, and help children stay active, which supports physical health and learning. We’re not promising a cure; we’re aiming to prevent some of the avoidable knock-on effects.

WHAT DOES TAKING PART INVOLVE, AND HOW DO YOU MAKE IT ACCESSIBLE FOR ADULTS WITH DCD?

Participation is simple. We ask participants to complete a short online questionnaire about motor skills and daily life and to send us a saliva sample using the kit we send out (we provide postage costs). Please scan the QR code on the advert if you would like to find out more or are interested in taking part or email us at j.gentle@surrey.ac.uk. Finally, participants receive a £20 amazon voucher for their time participating.

HOW ARE SALIVA SAMPLES USED TO STUDY GENETICS?

After you have sent us your saliva sample, the DNA in the sample will be extracted by researchers at University College London, and the data will then be analysed by us at the University of Surrey. Once the DNA has been extracted, the sample is disposed of, and we won’t use it for anything else.  Our project has ethical approval from the University of Surrey. When the project is over, your data will be deleted.

WHAT WOULD THE “IDEAL FUTURE” LOOK LIKE?

Children with DCD will receive support that reaches them early and at a time which is most effective.

• Families will have easily accessible routes to occupational therapy/physio and everyday tools (for handwriting, PE, organisation).
• Schools will adopt motor-friendly classrooms and assessment options.
• Mental health support is routine, informed by research into Dyspraxia/DCD and not an afterthought.

Adults with DCD can access workplace adjustments as easily as those with other, better-known conditions. 

WHAT SAFEGUARDS ARE IN PLACE TO PROTECT PRIVACY AND DATA?

Your data is stored under a code; only the core research team can link codes to identities. Personal data and genetic data are never kept in the same file. And all datasets have security and password protection. No data will leave the study team. We will only share the results of the study. 

DESCRIBE THE ETHICS PROCESS, WHAT INFORMATION AND REQUIREMENTS DID YOU HAVE TO ADHERE TO?

We go through rigorous university ethics approval, which must meet GDPR-compliant procedures, and the study procedures adhere to the Human Tissue Act, which protects the rights and wishes of people who provide their tissue (in this case, saliva) for research or other purposes. Data is stored on encrypted servers with limited, audited access. 

ARE THE RESEARCH FINDINGS PROTECTED IN ANY WAY THAT PREVENTS THE POSSIBILITY OF EUGENICS IN THE FUTURE? (THIS IS A MAJOR CONCERN IN THE ND COMMUNITY)

This is such an important concern, and one we take very seriously. Yes, there are a lot of protections in place. Most notably, the DNA samples are destroyed after we analyse them. The genes that influence motor development are not acting in a predeterministic way. Furthermore, there is no genetic test of common genetic differences that could be used to identify someone with DCD.

BEYOND GENETICS, WHAT ELSE MATTERS FOR BETTER OUTCOMES?

Plenty: practice opportunities for motor skills, access to physical activity, supportive teaching and exam accommodations, executive-function and organisation strategies, good sleep, positive peer relationships, and tackling anxiety. Family understanding and societal attitudes make a huge difference.

WHAT OTHER PROJECTS ARE YOU WORKING ON?

Alongside the genetics study, our team are currently recruiting for several studies, including the following; 

Motor planning in children with Dyspraxia/DCD 

• We are looking for families to participate in our study investigating how children plan movements
• This online study is in 2 parts, one for the parent and one for the child, 2—30 mins each.
• Contact Marie Martel for more information (m.martel@surrey.ac.uk) 

Reading Behaviour in Adults with and without Dyspraxia and/or Dyslexia
You will be asked to read a series of short sentences on the computer, while your eye movements are tracked.

• You will then be asked to complete three assessments, including a movement assessment. 
• Contact Lewis Jayes (l.jayes@surrey.ac.uk) for more info
•  This study is Guildford-based!

Join our database to learn more about our work. 

• The Motor Development and Impact (MoDI) Lab was set up to bring together researchers at the University of Surrey as we investigate typical and atypical motor development and its impact across the lifespan on social and cognitive skills, as well as physical and mental health. 
• If you would like to join the University of Surrey database or would like some more information, please email Judith Gentle (j.gentle@surrey.ac.uk).

THE DYSPRAXIA AWARENESS EVENT IN GUILDFORD—WILL IT RUN THIS YEAR, AND WHAT’S THE FOCUS? *Please note this has now happened (2025)

Yes, we are running it again this autumn in Guildford. 
This year’s event will be held on Saturday 1st November in Guildford. Our theme this year is "The Importance of Movement" - with a focus on how we can better motivate individuals with poor movement skills to get involved in exercise. We’ll also be exploring the wider implications of movement challenges, including difficulties with visuospatial tasks such as mathematics and navigation, and the significant impact these have on everyday life. The event is open to anyone with Dyspraxia/DCD, as well as the general public, teachers, OT’s, parents and children. We will have a range of lived experience and research talks, as well as open discussions and plenty of time to meet the University of Surrey MoDI team and others interested in Dyspraxia/DCD. The event is free and runs from 12-5pm. The link for registration and the program will be out soon.

Follow us on social media (X:
@MoDILab_Surrey; Bluesky: @modilab surrey.bsky.social) or contact Judith Gentle(j.gentle@surrey.ac.uk) for receive updates.

WHAT ROLE DO ORGANISATIONS LIKE DYSPRAXIA MAGAZINE AND DCD-UK PLAY?

They’re essential partners, especially as we do not have the Dyspraxia Foundation anymore to support awareness. They amplify lived experience, help families find credible information, connect people with services, and keep researchers like us grounded in real-world needs. They also help us shape better studies and spread results, so benefits reach the community quickly.

We look forward to seeing how this research unfolds and hope Judith will share the findings with us so we can pass them on to our readers. In the meantime, if you’d like to learn more or have specific questions, we encourage you to reach out directly to Judith and her team.