Today the Autism Research Centre have published the Spectrum 10K consultation and what they plan to do next.
During their consultation period they heard from over 500 Autistic people and parents/carers of Autistic children.The gap between the consultation finishing and their making the consultation public has been a long one (read Unpaused and Still Unethical).
The ARC has suggested that changes in their study plans are due to the “considerable” advances in autism research since the study was announced five years ago. This includes the expansion of existing Autistic genetic databases (most notably that of Q1K , SPARK and AIMS-2 Trials).
ARC has also shared “We have […] 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.”
Which is beyond fantastic news.
As the person who started the StopSpectrum10K hashtag and who later joined the Boycott Spectrum10K campaign I am beyond delighted. Saving 10,000 Autistic people’s DNA from being owned by others is an amazing feat.
The ARC are also proposing new research in response to the consultation. These studies will continued to be shaped by consultation with Autistic people and will not include DNA collection.
Possible topics include:
- The impact on late diagnosis on physical and mental health
- The health challenges faced by autistic women
- Co-occurring neuroimmune conditions
The ARC have suggested that the views shared in the S10K consultation shall inform all their future work.
Well done to the amazing efforts of Boycott Spectrum 10k (you could read their / our statement here).
As Autistic people we have collective power. Don’t let anyone tell you otherwise.
The full statement from the Autism Research Centre can be found here.
4 responses to “Closing Spectrum 10K: A Victory for Autistic Advocacy”
Woot!!!
Unfortunately, there is still danger. Cambridge University announced that it closed Spectrum10K because there are other DNA databases it can draw from, meaning there is still the danger that autistic people will go the way of people with Down’s syndrome, so we can’t celebrate just yet since there is still the danger of projects that violate points 1-6 and 10 of the Nuremberg Code.
[…] issues and for once again excluding autistic people from meaningful involvement. It was eventually cancelled, after some intense work done by autistic people and […]
[…] and community concerns around the project were finally taken seriously. For many of us, the closure of Spectrum 10K represents more than just a win; it affirms our collective power and the necessity of centring […]