Spectrum 10K was a cancelled study of autistic people intended to be the largest of its kind in the United Kingdom. The name refers to the

autism spectrum Autism, also known as autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by differences or difficulties in social communication and interaction, a preference for predictability and routine, sensory processing d ...

and the putative number of subjects. Led by

Simon Baron-Cohen Sir Simon Philip Baron-Cohen (born 15 August 1958) is a British clinical psychologist and professor of developmental psychopathology at the University of Cambridge. He is the director of the university's Autism Research Centre and a Fellow of ...

under the aegis of the

Autism Research Centre The Autism Research Centre (ARC) is a research institute that is a part of the Department of Psychiatry at the University of Cambridge, England. ARC's research goal is to understand the biomedical causes of autism spectrum conditions, to evaluat ...

(ARC), the study (an outgrowth of the defunct

Human Genome Project The Human Genome Project (HGP) was an international scientific research project with the goal of determining the base pairs that make up human DNA, and of identifying, mapping and sequencing all of the genes of the human genome from both a ...

) included researchers at the

University of Cambridge The University of Cambridge is a Public university, public collegiate university, collegiate research university in Cambridge, England. Founded in 1209, the University of Cambridge is the List of oldest universities in continuous operation, wo ...

, the

Wellcome Sanger Institute The Wellcome Sanger Institute, previously known as The Sanger Centre and Wellcome Trust Sanger Institute, is a non-profit organisation, non-profit British genomics and genetics research institute, primarily funded by the Wellcome Trust. It is l ...

, and the

University of California at Los Angeles The University of California, Los Angeles (UCLA) is a public land-grant research university in Los Angeles, California, United States. Its academic roots were established in 1881 as a normal school then known as the southern branch of the Ca ...

(UCLA). Participants (including adults and minors with parental consent) were asked to contribute their

DNA Deoxyribonucleic acid (; DNA) is a polymer composed of two polynucleotide chains that coil around each other to form a double helix. The polymer carries genetic instructions for the development, functioning, growth and reproduction of al ...

samples via swabs of saliva, as well as information on their overall mental and physical health. Overall, 10,000 autistic people and their families were to be involved in the study, which aimed to study genetic and environmental factors contributing to autism and co-occurring conditions.

Reaction

The project, which was anticipated to run for a decade, was controversial from the outset, in part, because the study was led by Baron-Cohen, who is criticised by many autistic people due to a proposed " extreme male brain" theory of autism and the idea that autistic people lack an essential human capacity for "

theory of mind In psychology and philosophy, theory of mind (often abbreviated to ToM) refers to the capacity to understand other individuals by ascribing mental states to them. A theory of mind includes the understanding that others' beliefs, desires, intent ...

". Additionally, many in the

autism rights movement The autistic rights movement, also known as the autism acceptance movement, is a social movement allied with the disability rights movement. It emphasizes the neurodiversity paradigm, viewing autism as a set of naturally occurring variations in ...

have criticised the lack of consultation with autistic people or their families, and raised

privacy Privacy (, ) is the ability of an individual or group to seclude themselves or information about themselves, and thereby express themselves selectively. The domain of privacy partially overlaps with security, which can include the concepts of a ...

, scientific ethics and

eugenics Eugenics is a set of largely discredited beliefs and practices that aim to improve the genetic quality of a human population. Historically, eugenicists have attempted to alter the frequency of various human phenotypes by inhibiting the fer ...

concerns due to fears of sharing genetic data. This led to the formation of the autistic-led Boycott Spectrum 10K group and hashtag, as well as a

Change.org Change.org is a website which allows users to create and sign petitions in an attempt to advance various social causes by raising awareness and influencing decision-makers. The site is a US-based for-profit company and claims to have 551 million ...

petition against the project. As a result of the backlash, the project was paused on 27 September 2021. However, autistic self-advocacy groups have continued to picket centres involved in the project. As a result of the protest, a second ethics review was conducted. The second ethics review found that the first ethics review was correctly decided and that the study should continue. In January of 2025 the project was cancelled, citing among other reasons the availability of genetic samples now available from other databases since the study was paused. The centre now stated an intention to research "ways to promote good health and prevent and treat ill health in autistic people," no longer researching genetic causation of autism.

References

External links

Spectrum 10K – The largest study of autism in the UK
Official website {{Authority control Autism in the United Kingdom Communication disorders Neurological disorders in children