Spectrum 10k is a trial being run by Cambridge University which is looking to collect and analyse DNA samples from 10,000 autistic people, and aims to establish if there is a link between genetics and autism. On the surface this sounds like your average scientific study, but the autistic community has strongly objected to it. In order to understand why people are objecting so strongly to Spectrum 10k, you need to do a little digging.
All the way back in World War 2, when the Nazi’s were striving for the perfection of the human race via eugenics, scientist Hans Asperger selected and aggressively studied individuals he deemed to be intellectually superior. These individuals could often read and write at an early age, took well to mathematics and the sciences, and were generally introverted rather than extroverted. Hans Asperger was not trying to support the development of the children he studied, but seemingly intended to use his studies to aid the creation of the perfect human race of Nazi dreams. Looking back we now see that he was finding stereotypically autistic individuals that could mask their neurodiversity more than others, and this is where the diagnosis of Asperger’s disorder was born, although in recent years the term has been dropped so as not to seem connected to a Nazi.
Professor Simon Baron-Cohen, one of the leaders of Spectrum 10k, has openly admitted that there are parallels to be drawn between the eugenics movement of which Hans Asperger was a participant and trying to analyse the DNA of autistic people, but resolutely states that this time around the data will only be used for good purposes, and not for things like pre-natal tests for autism. I remain sceptical for many reasons; not least because many are still convinced that autism should be wiped out, and exploring genetics would be a lot more efficient than behavioural therapies or devices that inflict painful sounds to “help” autistic people focus. In more recent times, by which I mean the coronavirus pandemic, several NHS trusts attempted to apply blanket Do Not Resuscitate orders to patients with learning disabilities. In this light, attempting to compile the genetic make-up of autistic individuals becomes even more sinister.
For the benefit of the study’s defenders, I do not object to Spectrum 10k for its shoddy ethics alone (although that should be enough), but also as a scientist and clinical trials coordinator. First and foremost, autism is not a disease, and therefore I can see no benefit to studying the genetics of autistic individuals. Frankly, the money would be better spent on other clinical trials.
The quality of the data collected in Spectrum 10k will also be significantly reduced by the inclusion criteria that requires a formal diagnosis of autism; it is well document that anyone who is not a cis-gendered, heterosexual, white able-bodied male will have immense difficulty obtaining a diagnosis at all. While having a standardised baseline for who to recruit is essential, I am not able to find any evidence of actions that will be taken to redress the skewing of genetic data towards white guys.
Finally, the professional conduct of scientists involved in Spectrum 10k has been appalling. Interactions with patients and clinical trials staff are severely restricted due to the potential to compromise data, and any communication must take place in very specific ways with the authorisation of the Research Ethics Council (among others). If I were to take to social media and knowingly interact with potential subjects at all I would be severely reprimanded, and if I were to insult them and compare them to animals, I wouldn’t have a job for much longer. The behaviour of Spectrum 10k staff such as Paula Wright does not inspire confidence in the team’s ability to run a safe trial.
It should be said that I have no objection to the collection of genetic data provided it is done with good reason and in a very particular manner; in fact, I’ve signed up to a similar trial called Decode ME looking to find any potential links between genes and M.E. I object to unnecessary and unsafe data collection, and Spectrum 10k is both unneeded and dangerous. I am sure all of my concerns and many more will have been raised during the set-up of both Decode ME and Spectrum 10k, but I only have faith in one of those trials taking the concerns safely. Quite how Spectrum 10k has managed to get ethical approval at all eludes me.
It is for all of the above reasons that I would advise people do not enrol onto Spectrum 10k, not because I do not want the community to be understood and cared for but precisely the opposite; I fear for the safety of the autistic community at large (of which I am a part) if Spectrum 10k is allowed to go ahead.