Our Role in Research Studies

Leeds Autism Services believes that research and studies committed to improving the lives of autistic people are an incredibly important part of creating a better society for neurodivergent people. We often take part in, or promote, research studies which will contribute towards better outcomes for the autistic people. 

Our organisation strongly believes that any attempts to prevent, cure or eliminate autism are unethical, immoral, and dangerous; Leeds Autism Services will never knowingly take part in, or promote, any research studies with these aims.  

About the Spectrum 10k Study

The University of Cambridge, including including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA), have recently launched their 'Spectrum 10k' study, which aims to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families." 

Many autistic people have raised concerns about the Spectrum 10k Study, particularly about issues around consent, the collection of DNA samples and how this could be used in the future. 

Our Position on the Spectrum 10k Study

We have looked carefully at the details of this study, and listened to the concerns many people have raised, and have come to the conclusion that Leeds Autism Services share many of those concerns. 

Although we agree that the study could improve the lives of autistic people, we do not feel that sufficient controls are currently in place to ensure that data collected as part of the study could not concievably be used to seek methods which aim to prevent or cure autism. 

Although we acknowledge that the Spectrum 10k study itself does not aim to prevent or cure autism, we fear that the outcomes of this study, or the data which is gathered during the research, could ultimately be used to seek methods to prevent or cure autism in future. 

We would urge anyone who is considering taking part in this study to look into it with a great deal of care before reaching a decision on whether or not to participate. Leeds Autism Services will not be promoting or taking part in the study; nor will we be encouraging our members, or their families, to take part. 

How Can I Find Out More? 

Indy100 have published an article which includes a variety of opinions on Spectrum 10k from autistic people: 

Read the Article

Neurodivergent academic Robert Chapman, Ph.D, has published a blog outlining his concerns: 

Read Robert's Blog

There's another blog from Sarah Boon, outlining her concerns: 

Read Sarah's Blog

The researchers have published a FAQ page to explain their research: 

Read the FAQ

You can also contact Spectrum 10k to ask any questions or share any concerns:

Contact Spectrum 10k 

If you would like to find out more about our aims, goals and values, we have a webpage where you can also read our autism policy:

Our Mission, Vision & Values 

Pete Hughes
Chief Executive
September 2021