Spectrum 10K

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Spectrum 10K was a cancelled [1] study of autistic people intended to be the largest of its kind in the United Kingdom. The name refers to the autism spectrum and the putative number of subjects. Led by Simon Baron-Cohen under the aegis of the Autism Research Centre (ARC), the study (an outgrowth of the defunct Human Genome Project) included researchers at the University of Cambridge, the Wellcome Sanger Institute, and the University of California at Los Angeles (UCLA). [2] Participants (including adults and minors with parental consent) were asked to contribute their DNA samples via swabs of saliva, [3] 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. [4]

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The project, which was anticipated to run for a decade, [5] was controversial from the outset, in part, because the study was led by Baron-Cohen, who had previously criticised by some autistic people due to a proposed "extreme male brain" theory of autism. [4] Additionally, many in the autism rights movement have criticised the lack of consultation with autistic people or their families, [4] and raised privacy, scientific ethics and eugenics concerns due to fears of sharing genetic data. [6] [7] [8] This led to the formation of the autistic-led Boycott Spectrum 10K group [9] and hashtag, [10] as well as a Change.org petition against the project. As a result of the backlash, the project was paused on 27 September 2021. [4] However, autistic self-advocacy groups have continued to picket centres involved in the project. [10]

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. [11] 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. [1]

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References

  1. 1 2 "Spectrum 10K". Autism Research Centre. Retrieved 2025-01-30.
  2. ↑ "10,000 autistic people to take part in the UK's largest study of autism". University of Cambridge. August 24, 2021.
  3. ↑ "ARC Volunteers - Spectrum 10K". parent.spectrum10k.org.
  4. 1 2 3 4 Sanderson, Katharine (27 September 2021). "High-profile autism genetics project paused amid backlash". Nature. 598 (7879): 17–18. Bibcode:2021Natur.598...17S. doi:10.1038/d41586-021-02602-7. PMID   34580484. S2CID   238202946.
  5. ↑ "Spectrum 10K". Health Research Authority.
  6. ↑ "Why Autistic People Are Worried by Spectrum 10K | Psychology Today United Kingdom". www.psychologytoday.com.
  7. ↑ Rubino, Sebastian (August 29, 2021). "Spectrum 10k: The Fallacy of Genetic Autism Studies".
  8. ↑ "What is the Spectrum 10K study into autism - and why are autistic people concerned?". www.indy100.com. August 29, 2021.
  9. ↑ "PLAIN TEXT OF THE FULL BOYCOTT S10K STATEMENT". September 4, 2021.
  10. 1 2 Pring, John (4 November 2021). "Autistic campaigners' anger over Spectrum 10K protest lock-out and 'scare tactics'". Disability News Service.
  11. ↑ Dattaro, Laura (2022-05-27). "Spectrum 10K gets green light from ethics agency". Spectrum. doi: 10.53053/OAMY4481 . S2CID   249143253 . Retrieved 2022-12-08.
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