In the summer of 2021, it was announced that a new study would be seeking the DNA of 10,000 Autistic people and their families. They wanted to do this to look at co-occurring conditions amongst Autistic people and improve our wellbeing.
Upon further scrutiny, it became clear that there were no guarantees on how data would be used beyond the scope of the project. While project leads were quick to deny any eugenics oriented goals, they were going to sell the data on, and even stated that they “couldn’t guarantee” that buyers wouldn’t use the data for eugenics.
The researchers tried to distance themselves from eugenics claims, especially as one of the project leads had ties to an overtly eugenics oriented organisation.
They hired Autistic celebrities as representatives of the project. This was a blatant attempt to manipulate people. One of those celebrities went on to out themselves as a bigot, and all round awful person. Unsurprisingly, those celebrities are quiet these days.
Given the lack of guarantees on how data would be used, not to mention a number of other ethical issues that myself and the rest of the Boycott Spectrum 10K team observed. We started the #BoycottSpectrum10k campaign.
One of the main things to come out of that campaign was our collective joint statement. The statement featured input from Autistic thought leaders, academics, and activists detailing every issue with the project.
This statement was given to the Health Research Authority.
It turned out, we were not the only ones who had contacted them about this. They took our statement and gave a promise to investigate our concerns.
We waited some more…
While we were waiting, Spectrum 10k was placed on pause, pending wider consultation with the Autistic community.
After what felt like an eternity of waiting, the HRA got back to us, claiming that they felt the promise of consulting the Autistic community vefore continuing with the project was sufficient.
For some time, there was little more than murmurings.
Then, recently, as 2022 was ending, and 2023 was starting; an Autistic academic made a post in a Facebook group asking Autistic people to come forward and be consulted.
Again, the use of an Autistic person was tokenistic, and for no other reason than to disarm our community.
And so, the Boycott team resurfaced.
Finally, approximately a week ago. Leaked screenshots of a communication came to our attention.
It was asking people to take part in a focus group about a project to use amniocentesis to investigate hormone levels and how that related to the development of Autistic babies.
So, as of now, it is undeniable that the Autism Research Centre in Cambridge, UK, has eugenics oriented objectives.
I hope that this gives you some idea of where we have been and where we are now. Honestly, many of us on the BS10k team have sacrificed a great deal of our wellbeing trying to put a stop to this.
The truth is, we probably won’t stop it, but we can make it so that others will think twice before trying anything similar.