Sarah Boon

The Dangers of Spectrum 10K

It was just an average Tuesday morning while I browsed through my Twitter feed when I came across the glossy brand Spectrum 10k research project. At first glance, it may seem harmless to your average member of the public, who may think it’s a good thing. However, as an autistic person advocating for acceptance, this is far from a glamorous research project that will improve my life. I’m worried it’s one step away from eradicating people like me from existing in the future. 

What is Spectrum 10K?

Here’s a fancy video explaining what spectrum 10K is

Spectrum 10k says they are 

“Spectrum 10K is the largest study of autism in the UK and is a research study involving 10,000 autistic individuals of all ages and abilities, and their relatives living in the UK. It is led by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA).”

They state they aim to

“Investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.”

But then conflict their aim by claiming. 

“The study will not look for a cure for autism and does not aim to eradicate autism. Every member of the Spectrum 10K team values and respects autistic differences and are working to promote inclusion, acceptance and dignity for autistic people throughout society.”

So to summarise, they want to investigate the genetics and environmental factors that contribute to autism but will not look for a cure for autism and does not aim to eradicate it. If they do not want to cure or eradicate autism, why are they investigating genetic and environmental factors contributing to autism? What is the motivation here? It isn’t explained. 

How could the DNA be used?

Some online have claimed that the DNA data cannot be used for a cure because Spectrum 10K claimed they won’t on a website. However, Dr Monqiue Botha explains how the DNA could be used in further studies seeking a cure. 

One primary concern is regarding the consent forms, and the rights participants have over their DNA samples. 

The consent form explicitly expects participants to consent for their DNA data to be used in future studies (it’s a compulsory question). We don’t know if this will be limited to certain studies or anybody interested in genetics and autism can have access to it, even if they have bad intentions. The principal researcher Prof Simon Baron-Cohen has acknowledged that autism and genetics research could be exploited.  

“There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”

So the principal researcher is fully aware of how this data could be misused in the future by eugenics but is still asking participants to consent for future use of their DNA data! I’m struggling to see how this got passed by the ethics committees. If this data is exploited, are we going to see a repeat of Nazi Germany’s response to disability? A scary but serious question that needs to be asked. 

Subgroups

Speaking of Nazi Germany. I’ve learned that Spectrum 10K wants to identify subgroups of autistic people. When I learned of this, it reminded me of Czech (2018) paper which showed how Hans Aspergers was involved with deciding which children should live or die based on their functioning label. Again how can we guarantee that if there is a genetic element to subgroups, those autistic fetuses deemed low functioning won’t be aborted? Especially if the data can be misused in the future. 

Informed consent and children

One huge question is the consent of some pariticpants. As children are being recruited for this study (as young as 6), they cannot consent or fully understand how their DNA might be used in the future. As there is no direct benefit for participating in this study and this is not a medical treatment that any child requires, you have to ask if it’s even ethical for parents to consent to their child’s DNA being used in this way. It’s unlikely that a parent can predict how their 6 year-old child would feel at 18 about their DNA being used for studies of this nature. 

It not only children, but autistic people who are deemed to lack capacity DNA will be used, with parents and guardians consenting on their behalf. Again, this is not an essential procedure and if an adult can’t give a clear indication of consent, then is it ethical to use their data at all? I think not. Any person whose DNA is being researched without their consent is exploitation in my view. Regardless of age or supports needs, we all have rights and need to be empowered to have autonomy over our lives, not others making these decisions on our behalf.

But they want to improve the health and well-being of autistic people with this research? Surely that’s a good thing?

They state that it’s their aim, but what is missing for me is the justification of why looking at autistic people’s and our families DNA will reach this goal? Some autistic people also have conditions that would benefit from further medical research, but why was autism deemed the root cause? Again there is no sources or references to back up this claim. Why are they not looking at the causes of medical conditions directly rather than focusing on autism’s genetic and environmental factors? As non-autistic people also suffer from the conditions they list, such as gastrointestinal problems and epilepsy. Surely it’s letting those people down but going down the autism route to answer this? I have a lot of questions.

Also, I really don’t see how sending my DNA would benefit my well-being? 

Who is involved? 

Now it’s also essential to look at who and which organisations are involved with this project. On the Spectrum 10K website, it states. 

“Spectrum 10K is led by the University of Cambridge, the Wellcome Sanger Institute and the University of California Los Angeles, and is funded by the Wellcome Trust.”

University of Cambridge and Simon Baron-Cohen

The University of Cambridge’s Autism Research Centre (ARC) is carrying out this research which Simon Baron-Cohen leads. If you’ve ever delved into the world of autism research, you’d undoubtedly come across this name. Unfortunately, he’s responsible for serval problematic autism theories, including Theory of Mind and Extreme Male Brain theory. 

For comprehensive critiques of his theories, please see the links below. 

For somebody who spread such a damaging and dehumanising narrative about autism for decades, I’d be curious as to why his research department at Cambridge is involved in a study looking at genetic and environmental factors that contribute to autism? I’m assuming it’s because their mission is to understand the biomedical causes of autism and to evaluate promising interventions for autistic people’ I’m finding it harder to believe Spectrum’s 10k claim that “The study will not look for a cure for autism and does not aim to eradicate autism.” is genuine. Although he’s publicly supported the idea of neurodiversity in recent years, he hasn’t retracted any of his theories that oppose the concept of neurodiversity. All I’ve heard him claim was regretting gendering the Extreme Male Brain Theory.

He did confirm on BBC breakfast that they were looking for the genetic and environmental cause for autism with this study. Again why is Baron-Cohen so enthused to find the cause of autism? 

Baron-Cohen has also said the below about autism and pre-natal tests. So why should we believe that’s he’s changed his mind? especially with the nature of the Spectrum 10K project.

Wellcome Sanger Institute and Matthew Hurles

Wellcome Sanger Institute is not an organisation I am familiar with, but looking at their website, their primary purpose is to analyse DNA to help improve people’s health. My question is, how are they defining health in the spectrum 10K project? Is it autism, the physical and health conditions some autistic people have? Or both? These are factors that need to be made public, so the motivations and purpose of the Wellcome Sanger Institute for being part of Spectrum 10K can be thoroughly scrutinised*. 

*Update I have come to learn that the Wellcome Sanger Institute has misused DNA. Again how can we trust spectrum 10K when one of the key players in the project has a poor history of misusing DNA? 

Wellcome Sanger Institute’s Matthew Hurles, Head of Human Genetics and Senior Group Leader for Spectrum 10K, states in an online bio:

“Together we are investigating the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening, with the aim of improving the prognostic information that can be provided to parents.”

Considering his experience, how can we believe their statement that they are anti-eugenics when you consider Hurles’ career history and that Spectrum 10K “Aims to investigate the genetic and environmental factors that contribute to autism”  is sincere?

UCLA and Daniel Geschwind

Next is UCLA, which was the birthplace of the controversial  ABA therapy, which I do not support. Please read the resources below as to why ABA is problematic. 

Obviously, the people working at UCLA during the 1960s will not be practising today, but what is not clear if the same department at UCLA is involved with this project? And if so, have they genuinely addressed the problematic history of ABA? Or does the legacy of the ABA studies carried out in the 1960s still influence their current research today? Again, this is not addressed on the Spectrum 10K website*.

*Update: 24 hours after this was initially posted, I learned that UCLA’s Daniel Geschwind is a Co-Principal Investigator of Spectrum 10K and previously worked for ‘Cure Autism Now’. How does Spectrum 10K expect the public to trust their apparent non-eugenics stance when one of their leading researchers literally worked for an organisation dedicating itself to curing autism? I’ll leave you to form your own opinions, but I certainly cannot trust this research team with any of my data, let alone my DNA!

Autistica

Autistica’s CEO is an ambassador for this project, which raises a concern for me. Autistica were involved in the aim-2 trials that aim to look for autism biomarkers so that the trials can find treatments. EEEKKK! So looking back at Spectrum’s 10K aim to “Investigate the genetic and environmental factors that contribute to autism”, this rings alarm bells for me. Again I also have to ask how Spectrum’s 10K claim to be anti-cure and eugenics considering the history of the people and organisations involved. It makes no sense to me, and it is not adequately addressed on their website!

Autism Speaks

Ann Memmott has pointed out that Autism Speaks potentially involved with the funding on Twitter. It needs to be determined because of Autism Speaks’ awful practices over the years. 

*Update: Spectrum 10K has addressed the issue of Autism Speak’s potential involvement with the following tweet. 

Although they have no plans to work with Autism Speaks currently, they haven’t ruled it out. Which for many of us autistics is not enough due to their history.

Wellcome Trust

Spectrum 10K is funded by the Wellcome Trust, which appears to fund many research projects, including mental health. I’d like to know how the Wellcome Trust decided to fund Spectrum 10k and how much? As these factors are not clear and it also needs scrutinising. 

Money 

Although I have not found figures, I can imagine that a project to screen 10,000 people’s DNA will be expensive. Likely in the millions. Considering underfunded services, long diagnostic waiting times, and England’s latest autism strategy isn’t well funded, we have to ask why are millions being spent on this project when autistic people urgently need support and services that will meet their needs?. They also claim on the Spectrum 10 website that “There are no direct benefits of taking part.” So why is so much being invested in Spectrum 10K when there are no direct benefits to autistic people? 

Also, they have celebrity endorsements to promote this campaign. If you are one of those celebrities, I would like to know your genuine views of why you felt the need to be a part of this and how you think Spectrum 10K will benefit autistic people’s lives? Undoubtedly celebrities were paid a sizable fee to be ambassadors of Spectrum 10K. Still, this money is needed far more in education and social care so that autistic people’s needs can actually be met. 

Final thoughts?

There are loopholes behind the shiny branding and celebrity ambassadors for our DNA to be exploited and used for purposes beyond what spectrum 10K claims on their site. 

My View? Avoid this study entirely. My DNA is not for sale. I will not be responsible for autistic lives being prevented in the future.

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Further update on spectrum 10k: “Why I still don’t trust Spectrum 10K”