Spectrum 10k Closed: The power of community organising
Those who have been following my work for the last 5 years will know that there was a time when I was heavily involved in a campaign to stop infamous study known as Spectrum 10k. This study raised a number of ethical concerns and s0arked outrage in the neurodiversity movement. Myself and other activists and professionals formed the Boycott Spectrum 10k group to push back against it.
What was Spectrum 10k?
Spectrum 10k was lead by Simon Baron-Cohen and the Autism Research Centre (ARC) at the University of Cambridge. Their stated aim was to investigate co-occurring conditions in Autistic people by collecting DNA samples from 10,000 Autistic people and their families.
Despite this stated aim, freedom of information requests indicated that they also sought to identify the genetic basis of autism's emergence.
Liam O’Dell also obtained the study’s original grant application to the Wellcome Trust, in which researchers said Spectrum 10K would investigate “which tissues, gene-sets, cell types and developmental periods are enriched” for a “genetic risk” of autism.
liamodell.com
This Information alongside countless other ethical concerns were collated by the Boycott team and submitted to the Health Research Authority (HRA). The study was paused, and the HRA conducted an eight-month investigation. Ultimately, they allowed the project to continue with additional consultation from the Autistic community. You can read the statement we submitted to the HRA by clicking here.
Why Is Everyone Suddenly Talking About S10k Again?
The following is an excerpt from a statement issued on the ARC website.
Whereas our intention had been to create a database with 10,000 DNA samples related to autism health research, there are now other very large health and genetic databases in the UK and internationally that have become available as a resource for autism health research. This means that we no longer need to collect new DNA samples as we can use existing health and genetic databases to better understand the health challenges faced by autistic people. We have therefore decided to close the Spectrum 10K project and find other ways to carry out research to better understand the physical and mental health of autistic people.
Autism Research Centre
Simply put, the Autistic community won. The further consultation appears to have made it clear that we will not allow their unethical methods and goals to be viable. Spectrum 10k is officially closing, and that demonstrates our collective power as a community. This is not the end, though.
What Comes After Spectrum 10k?
Groups such as the ARC will find other ways of doing similar research. That is why we as a community and movement need to keep pushing forward, showing that we are not something to be prevented or fixed. Genetic research into autism has been around for a long time, and often unethical. It will continue into the future for as long as we allow neuronormativity and the pathology paradigm to remain prevalent in our societies.
The war may not be over, but this was a big fight, and we have shown that we won't let people get away with this. For now, take time to be proud of the good you have done, and stay prepared to face the next challenge.
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