Outstanding Concerns about Spectrum 10K
I’ll try to keep this brief; if anyone wants the long version, I would point them to this highly intelligent and well-informed panel discussion and the very detailed statement put out by Boycott Spectrum 10k.
Eugenics
While it is now well-understood that autism is genetically complex, this does not altogether neutralise the threat of eugenics. Spectrum10k seeks to identify subtypes of autism, and use genetics to develop better diagnostic tests; if any genetically-determined (or strongly genetically associated) subtypes are identified, what is there to stop a prenatal test being developed?
In the context of a £3.2 million study focused on the genetics of autism (this is based on the Wellcome grant, not on anything publicly put out by Spectrum 10k) Simon Baron-Cohen’s Radio 4 argument that we don’t need to worry about eugenics, because autism is diagnosed behaviourally falls, flat. Polygenic does not imply impossible to screen for, and his 2019 comment that ‘There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics’ seems as apt as ever.
The fact that one of the co-leads on the study was for a long time associated with the organisation ‘Cure Autism Now’, and still talks about autism as if it were a disease, epitomises why these concerns are still very much live and valid. Much better arguments would be required to persuade people that there is nothing to worry about from this study, or that the positive outcomes will be worth the risks.
Informed Consent
I am troubled that there is no mention anywhere in the Spectrum 10k of the larger international genetics consortium mentioned in the Wellcome materials and briefly in an interview for the Polar Bear Project. If this is a goal of the study, as Simon says in that interview, this is something people should really be aware of. There is much about the larger context that I feel participants ought to be aware of, in order for them to give informed consent. It is puzzling, at least without this context, that all participants are required to give consent to their genetic data being used for future studies.
The collection of DNA from minors without their explicit assent is of particular concern, and the materials produced to communicate about the study both to minors and to those with learning disabilities are poorly produced; it is hard to see how their consent could be fully informed even where it is sought. It is also unclear to an outside observer why DNA is required from those too young to give informed consent at all; surely the DNA of adults would do just as well? Perhaps the researchers are not confident they would be able to find 10,000 consenting adults?
In general, I would argue that both the methodology and aims of the study are too obscure for people to give informed consent for something as sensitive as the use of their genetic data, as things stand — especially as it is also unclear what steps will be taken to remove this data from the study if someone later withdraws.
Communications
As outlined above, there were serious, foreseeable questions about this study, which the researchers, PR people and study ‘ambassadors’ should have been well-prepared for from the start. Instead they seemed shocked by the strength of the backlash against the study, almost completely blindsided by people’s concerns, and quite unable to deal with them in a way that allowed people to feel heard. The FAQ published after a few days answered some concerns but not most, and this and other statements have consistently had a condescending air.
The ambassadors are a particular concern. Either they were given no social media training and guidelines for dealing with this role, or they were expected to dismiss autistic community concerns as anti-science and conspiracy-thinking. Bear in mind here that many of the autistic people raising concerns are scientists themselves, and often extremely well-informed. In a few instances misinformation has been shared, but that is mainly down to guesswork based on hurried research to fill gaps in the information shared directly by Spectrum 10k.
One ambassador in particular, Paula Wright, is openly transphobic and hostile to the autistic community, and has been insulting and haranguing autistic people on Twitter from the day the study was launched — something that I know many people have tried to draw Spectrum 10k’s attention to. I don’t know why she has been allowed to bring this study and the scientists involved into disrepute with no apparent consequences; many have speculated.
So these are my main concerns, and they are shared by many autistic people and others who have looked into it. It’s not that all genetic or biological research on autism should be stopped, although research on the causes of autism is, as you’re probably aware, a very low priority for autistic people, our families and professionals working with us. But it needs to be handled sensitively and cautiously, and should be focused on community priorities.
Yes, we want research on epilepsy, gastrointestinal issues and hypermobility/EDS (which is oddly absent from the Spectrum 10k site). There is likely to be a place for genetic research looking into the links between autism and these, but it surely doesn’t need to be embedded in a study focused on causes of autism and putative subtypes.
I don’t know what the future of this project is going to look like, but if that’s what the £3.2 million grant was for, it’s hard to see how consultation is going to change that. Consultation is too often tokenistic, with the people consulting already knowing what they want to do, choosing who they speak to and which of their views they take account of. Nevertheless, we await the details of this consultation with interest.
