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

autism spectrum The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...

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 Developmental Psychiatry at the University of Cambridge, England. ARC's research goal is to understand the biomedical causes of autism spectrum conditio ...

(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 , mottoeng = Literal: From here, light and sacred draughts. Non literal: From this place, we gain enlightenment and precious knowledge. , established = , other_name = The Chancellor, Masters and Schola ...

, the

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

, and the

University of California at Los Angeles The University of California, Los Angeles (UCLA) is a public university, public Land-grant university, land-grant research university in Los Angeles, California. UCLA's academic roots were established in 1881 as a Normal school, teachers colle ...

(UCLA). Participants (including adults and minors with parental consent) were asked to contribute their DNA 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 is anticipated to run for a decade, was controversial from the outset. Even before the project began, Baron-Cohen had been criticised by some autistic people due to his "

extreme male brain Extreme may refer to: Science and mathematics Mathematics *Extreme point, a point in a convex set which does not lie in any open line segment joining two points in the set *Maxima and minima, extremes on a mathematical function Science *Extremop ...

" theory of autism, which argues that autistic people lack empathy. Additionally, many in the

autism rights movement The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...

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 fringe set of beliefs and practices that aim to improve the genetic quality of a human population. Historically, eugenicists have attempted to alter human gene pools by excluding people and groups judged to be inferior or ...

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 worldwide nonprofit petition website, based in California, US, operated by the San Francisco-based company of the same name, which has over 400 million users and offers the public the ability to promote the petitions they care abo ...

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.

References

External links

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