Tuesday, August 31, 2021

The Autistic Community’s Concerns Regarding Spectrum 10K and Eugenics Are Valid

Photo of a yellow diamond "Dead End" road sign flooded to mid-post and reflected in the water underneath.
By athree23 from Pixabay
[image: Photo of a yellow diamond "Dead End" road sign flooded to mid-post
and reflected in the water underneath.]

A new autism research project, Spectrum 10K, has just been launched accompanied by much media hype, celebrity endorsement, and rhetoric about neurodiversity. It is led by the University of Cambridge (principally Professor Simon Baron-Cohen), in collaboration with the University of California, Los Angeles, and the Wellcome Sanger Institute. Spectrum 10k aims to be the largest genetic study conducted on autism in the United Kingdom's history, and is trying to collect the data of 10,000 autistic people and their families.

We write in personal capacity as concerned autistic academics who research autism in the UK from a variety of fields. While the project’s aim is to help cultivate autistic wellbeing, the main outcome of the project is to generate an autism DNA database, which will likely be used by other researchers. A key worry expressed by many autistic people is that this database will be used for eugenic purposes in the future such as preventing autistic or otherwise neurodivergent people from existing. 

For the most part, autistic people and our families do not want funds to be used on genetic research, and would prefer them to be used to focus on services and societal interventions that can impact the wellbeing, quality of life, and mental health of autistic people across the lifespan. So far no genetic studies have improved autistic people’s lives, yet biological research continues to consume most autism research funding.

A bar chart: "Percentage of Total ASD Funding by Research Priority According to Country" The four countries are Australia, Canada, United Kingdom, and United States. Australia's percentages are Screening & Diagnosis: 11%, Biology: 17%, Risk Factors: 22%, Treatments & Interventions 9%, Services 10%, Lifespan Issues 11%, and Infrastructure & Surveillance 21%. Canada's percentages are Screening & Diagnosis: 9%, Biology: 40%, Risk Factors: 26%, Treatments & Interventions 27%, Services 2%, Lifespan Issues 10%, and Infrastructure & Surveillance 6%. United Kingdom's percentages are Screening & Diagnosis: 6%, Biology: 64%, Risk Factors: 0%, Treatments & Interventions 20%, Services 1%, Lifespan Issues 9%, and Infrastructure & Surveillance1%. United State's percentages are Screening & Diagnosis: 8%, Biology: 35%, Risk Factors: 24%, Treatments & Interventions 16%, Services 5%, Lifespan Issues 2%, and Infrastructure & Surveillance10%.
Source: Interagency Autism Coordinating Committee
[image: A bar chart: "Percentage of Total ASD Funding by Research Priority According to Country"
The four countries are Australia, Canada, United Kingdom, and United States.
Australia's percentages are Screening & Diagnosis: 11%, Biology: 17%, Risk Factors: 22%, Treatments & Interventions 9%, Services 10%, Lifespan Issues 11%, and Infrastructure & Surveillance 21%.
Canada's percentages are Screening & Diagnosis: 9%, Biology: 40%, Risk Factors: 26%, Treatments & Interventions 27%, Services 2%, Lifespan Issues 10%, and Infrastructure & Surveillance 6%.
United Kingdom's percentages are Screening & Diagnosis: 6%, Biology: 64%, Risk Factors: 0%, Treatments & Interventions 20%, Services 1%, Lifespan Issues 9%, and Infrastructure & Surveillance1%.
United State's percentages are Screening & Diagnosis: 8%, Biology: 35%, Risk Factors: 24%, Treatments & Interventions 16%, Services 5%, Lifespan Issues 2%, and Infrastructure & Surveillance10%.]

Despite fierce opposition from autistic people on and beyond social media, the key further clarification from the Spectrum 10k team has come in the form of an FAQs document. Here they explain that they want to use the DNA to target co-occurring conditions rather than autism itself, and moreover that they will be careful with the data to make sure it will not be used for eugenic purposes. While targeting some co-occurring conditions such as epilepsy may be a legitimate aim, there are two reasons to be worried by this reply.

First, we are sceptical that data protection against eugenic applications can be guaranteed. Newly discovered genetic syndromes could give rise to more prenatal tests. The study was approved to be shared “[i]n some instances” with “commercial collaborators” or “potential academic collaborators” or in “highly secure research databases”. Baron-Cohen himself has previously warned, “There’s no way that we can ever say that a future political leader or a scientist won’t use [genetic autism] research for eugenics.” Beyond this, autistic advocates have raised concerns about some of the researchers involved, and the Sanger Institute, which is involved with the Spectrum 10k project, has been accused of misusing DNA as recently as 2019.

Second, some of the co-occurring conditions they list as targets are ADHD and dyspraxia, which we likewise do not think should be targeted for elimination. They also target mental health problems such as anxiety and depression. While targeting mental health problems is welcome, underling the idea that these can be explained by autistic DNA shows the implicit genetic determinism expressed in the project. In fact, research suggests that autistic mental health and wellbeing issues are accounted for by stigmatisation, a lack of societal acceptance, a pervasive need to mask autism to “fit in” to avoid victimisation, a lack of services which are accessible and adapted for us, and other social and interpersonal barriers that genetic data cannot, and never will, address.  

Many autistic advocates clearly feel that the project’s team have not addressed or have dismissed their concerns, as can be seen by searching through the #StopSpectrum10K hashtag on Twitter. One celebrity ambassador responded by seeming to imply that concerned autistics were “conspiracy theorist[s]” who simply “fear science.” Yet the worries being expressed by many members of the autistic community are valid.

From the beginning of the conceptualisation of autism as a diagnostic category in Nazi-annexed Austria, autistic people have been subject to eugenic efforts, with Dr. Hans Asperger first diagnosing and then dividing autistic children into those worthy of life and those to be murdered. This genetic determinist tradition has been maintained with initiatives aiming for prenatal tests and genetic markers to prevent autism and co-occurring disabilities in the first place. Today, autism researchers regularly display a negative bias towards autistic people. Autistic people are still often dehumanised in research through being compared to non-human animals (the subject of almost as much “autism” funding as human participants), are referred to as less domesticated, treated as evidence of an epidemic or burden, and are rarely meaningfully involved in autism research.

Autistic people celebrate equitable science, and often call for higher standards, rigour, and involvement in the process of science. Members of the autistic community are justified in worrying that this autism genetic project, which may bring some good, might also contribute towards untold harm. 

Robert Chapman, PhD (philosophy and bioethics)
Monique Botha, PhD (community psychology)
Steven Kapp, PhD (psychology and disability studies)
Anna Stenning, PhD (humanities)
Amy Pearson, PhD (developmental psychology)
Eloise Stark, DPhil (experimental and clinical psychology)
Damian Milton, PhD (social sciences)
Gemma Williams, PhD (linguistics)