Update from the Spectrum 10K Team (10th September 2021)
An apology and an update
I am writing on behalf of the Spectrum 10K research team, including the co-lead researchers, to provide a further update regarding the study. From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.
Pausing whilst we listen
We have decided to pause any further recruitment of new participants into Spectrum 10K. We will also not analyse any data already collected in Spectrum 10K. This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K. This may take several months. Details of the consultation will be announced on our website.
Anyone who wishes to register their interest in Spectrum 10K during the pause will be able to do so
We will not send out any new saliva kits until the consultation is complete. If you have received a saliva kit you can send us a saliva sample that we will store securely (without any genetic analysis) until the consultation is complete.
The University of Cambridge, the Wellcome Trust, and the Cambridgeshire & Peterborough NHS Foundation Trust (co-sponsor of the study) are all fully supportive of us pausing Spectrum 10K to undertake this listening. They recognise the study’s scientific importance and that there has been no breach in the protocol as approved by the NHS research ethics committees. This pause reflects that we want to listen to and address concerns.
Thank you to those autistic people and their families who have shown their support for the study and continue to do so. We hope that together with autistic people and their families we can address the concerns.
Simon Baron-Cohen on behalf of the Spectrum 10K team To download this statement please click here
Get in touch
Email us at firstname.lastname@example.org
Or call our freephone number: 0800 0520050
Our office hours are Monday to Friday 9am to 5p
Spectrum 10K is led by the University of Cambridge, the Wellcome Sanger Institute and the University of California Los Angeles, and is funded by the Wellcome Trust.
Aucademy | September 4, 2021
This is the plain language summary for a letter written by lots of Autistic people who are upset about a new study called Spectrum 10K, which was talked about for the first time on the news and social media on Tuesday 24th August 2021.
This letter – also called a statement – is about why we are upset about this new study, and we want as many Autistic people and their friends and family to read why we are upset. If people agree that this study sounds wrong and believe like we do that it is not a good or safe study for Autistic people, then we are asking people who are able to, to sign our statement (letter) to say they agree with us, and to show they support us asking for the study to be changed or even stopped from happening.
The full statement (letter) including where you can sign if you say you agree with our statement can be found HERE.
By Mette | Learning Disability Today | September 1, 2021
The Spectrum 10K Study aims to look at biological and environmental factors linked to the wellbeing of autistic people. Mette discusses why the study has been met with concern and controversy by the #ActuallyAutistic community and their allies.
Spectrum 10k is projected to be the UK’s largest study into autism with the vision to investigate how genetic and environmental factors impact autistic people and their wellbeing. Led by the Autism Research Centre (ARC), and directed by Professor Simon Baron-Cohen, Spectrum 10k has been met with concern and controversy by the #ActuallyAutistic community and their allies.
By Mark Eadie | Septermber 7, 2021
Wow! Could we be on the verge of a Eureka moment? Cambridge University has launched Spectrum 10k, the UK’s largest study of autism, involving 10,000 participants. Researchers aim 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”.
What’s more, their work is being endorsed by charities supporting autistic people, while celebrities, including Paddy McGuinness, who has three autistic children, and Chris Packham, who is autistic, are giving it their backing. Read full article >>
Shannon Des Roches Rosa | August 31, 2021
A new autism research project, Spectrum 10K, has just been launched accompanied by much media hype, celebrity endorsement, and rhetoric about neurodiversity. It is led by the University of Cambridge (principally Professor Simon Baron-Cohen), in collaboration with the University of California, Los Angeles, and the Wellcome Sanger Institute. Spectrum 10k aims to be the largest genetic study conducted on autism in the United Kingdom’s history, and is trying to collect the data of 10,000 autistic people and their families.
A Personal Perspective: Controversial research on genes and neurominorities.
Robert Chapman Ph.D. | Neurodiverse Age
As many people in the autistic community have by now heard, Professor Simon Baron-Cohen, who has spent the past few years rebranding himself as a neurodiversity proponent, has announced a new research programme called Spectrum 10K. This collaboration, between the University of Cambridge and the University of Los Angeles, will, among other things, examine the DNA of a hoped-for 10,000 autistic participants, with the expressed aim of increasing autistic well-being.
While the aim of improving well-being is a welcome one, the focus on autistic DNA has worried many autistic people. After all, autistic people have long been subject to eugenicist attempts to eliminate us, despite most of us wanting to be accepted.
The waters surrounding autistic genetic studies are best described as murky. The MSSNG project from Autism Speaks and SPARK from the Simons Foundation are prime examples (as both organizations are partners). Autistic people regularly opine about the amount of money spent on genetic research as opposed to resourses being invested in providing supports or conducting research on issues related to autistic culture and quality of life.
Both SPARK and MSSNG are focused primarily in the United States. Recently, The United Kingdom has weighed in on the matter with Spectrum 10K, a brand new project spearheaded by Cambridge University with Simon Baron-Cohen at the helm as lead researcher.
Spectrum 10k aims to collect genetic material from 10,000 autistic people in the UK to identify “the genetic causes of autism, and the environmental ones,” according to Baron-Cohen. Read full article >>
A study called Spectrum 10K was launched last week by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA). Its aim is 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.”
Research to improve support for autistic people is vital. However, we are not involved in this project as an organisation and declined to participate. We know it is proving divisive and that many autistic people and some researchers have serious concerns and questions, particularly about the nature of the consent, the collection of DNA samples and how this could be used in the future.
We are writing to the Spectrum 10K research team to raise these important concerns. We note that Spectrum 10K have recognised that there are concerns and promised to provide more information on their website in the future.
We strongly encourage autistic people and parents considering taking part to look into this study carefully, and consider the potential benefits and harms, before deciding whether or not to participate.
Research is vital but…
We want more research into autism, focused on how best to support autistic children and adults with the biggest challenges they face. For many years, autism was mis-characterised as a disease or illness, and something to be cured. It is not. Despite much better understanding today, and the efforts of autistic people themselves, this attitude has not disappeared entirely. Society and researchers still have a long way to go to fully earn the trust of all autistic people.
Researchers must make sure autistic people are meaningfully involved at every stage of the research process, respond to their feedback and make sure that all involved know exactly how their input will be used.
What to do if you have questions or are concerned about Spectrum10K
- The researchers have an FAQ.
- The Independent’s Indy100 have written about the different views of Spectrum 10K, including concerns.
- Email the research group to outline your questions/concerns.
- Find out more about our thoughts on research and the projects we’re involved in.
By Rachel Charlton-Dailey | September 09, 2021
Last week marked the launch of the largest autism study in the United Kingdom called Spectrum 10K. The goal of the research is to learn more about the biological and environmental factors that may lead to diversity on the autism spectrum.
While the research is ambitious, some autistic people and disability activists have expressed concerns about how the information on the participants will be used—now and in the future. Read full article >>
From Wikipedia, the free encyclopedia
Spectrum 10K is the United Kingdom’s largest study of Autistic people; the name refers to the autism spectrum and the putative number of subjects. Led by Professor Simon Baron-Cohen under the aegis of the Autism Research Center (ARC), the study (an outgrowth of the defunct Human Genome Project) includes researchers at the University of Cambridge, the Wellcome Sanger Institute, and the University of California at Los Angeles (UCLA).  Volunteers contribute their DNA via swabs of saliva; minors may contribute with parental consent.  The project, which is anticipated to run for a decade, has raised privacy, scientific ethics and eugenics concerns in the neurodiversity movement.
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