Learning Disability Today
Supporting professionals working in learning disability and autism services

New landmark autism project raises concerns about reuse of DNA data

A new landmark research project will examine how biological and environmental factors impact on the wellbeing of autistic individuals.

Spectrum 10K will recruit 10,000 autistic UK individuals, as well as their relatives, and aims to identify types of support and treatment which alleviate unwanted symptoms and co-occurring conditions that cause autistic people distress.

The team were keen to stress that it views autism as an example of neurodiversity and is opposed to eugenics or looking for a cure for preventing or eradicating autism itself. 

Yet, there was concern amongst the autistic community about how the DNA samples collected by researchers would be used in the future.

The Spectrum 10K team says it collaborated with an Advisory Panel consisting of autistic individuals, parents of autistic children, clinicians, and autism charity representatives to ensure Spectrum 10K was designed in a way that best serves the autistic community. 27 specialist NHS sites around the UK are also helping with recruitment for Spectrum 10K.

The project will be led by researchers at the Autism Research Centre (ARC), the University of Cambridge, together with the Wellcome Sanger Institute and University of California Los Angeles (UCLA). 

Project aims to examine additional physical health conditions

Professor Simon Baron-Cohen, Director of the ARC who is leading Spectrum 10K, said: “There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not.”

In the UK, there are approximately 700,000 autistic individuals. The level of support needed by autistic individuals varies considerably. Many autistic people have additional physical health conditions such as epilepsy, or mental health conditions such as anxiety or depression.

It is unclear what gives rise to the diversity within the autism spectrum or why some autistic people have better outcomes than others. The project aims to answer this question and to identify what support works best for each individual.

Individuals of all ages, genders, ethnicities and intellectual capacities will take part in Spectrum 10K. Eligible participants join by completing an online questionnaire and providing a DNA saliva sample by post. Autistic participants involved in Spectrum 10K can also invite their biological relatives (autistic or otherwise) to participate.

Researchers say that the information collected from the questionnaire and DNA saliva sample, and information from health records will be used to increase knowledge and understanding of wellbeing in autism.

Dr James Cusack, CEO of the autism research charity Autistica and an autistic person, said: “We are delighted to support Spectrum 10K. This project enables autistic people to participate in and shape autism research to build a future where support is tailored to every individual’s needs.”

Recruitment for Spectrum 10K is now open. Autistic children under the age of 16 must be registered by their parent or legal guardian. Autistic adults who lack the capacity to consent by themselves must be registered by a carer/or family member. To register, participants should visit www.spectrum10k.org


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