Under the new study gene samples from 10,000 autistic people are being collected, and combined with samples already gathered from 90,000 autistics around the world, including questionnaires, medical and educational records. The autistic community fears that the study opens the door to “eugenics” without proper accountability and safeguards. Being autistic myself, a Women In Innovation award winner and social entrepreneur, I value my independent and outside the box thinking. A eugenics test feels like a denial of our existence and contributions to society. It is a dangerous tampering with human talent pool and diversity of thought.
The research consortium behind Spectrum 10K is led by Professor Simon Baron-Cohen, director of Cambridge’s Autism Research Centre, and involves the Wellcome Sanger Institute and the University of California Los Angeles. The co-principal investigator from UCLA, Daniel Geschwind, has affiliations with organisations Cure Autism Now and Autism Speaks, which are both branded autism hate groups by the autistic community. The Wellcome Sanger Institute, a leader in genomics and computational biology, has allegedly unethically handled genetic materials in the past.
Steering away from the fact that the study aims for a genetic diagnostic tests, and the research consortium being open to sharing data with “commercial partners” in the future, Prof. Simon Baron-Cohen says that Spectrum 10K is a research into “wellbeing”, stemming from “an urgent need” to understand why some autistic people have epilepsy or poor mental health, while others do not. These aims however are not part of the study funding grant, which focusses on identifying autistic genes, defining subgroups and ‘improving’ the diagnosis’s. The study also does not involve any epilepsy researchers.
Prof. Baron-Cohen goes on to say that the causes and genetic subgroups of autism will be researched. This is highly controversial within and opposed by the autistic community, as the reason for poor mental health resides in attitudes and barriers in society; how ‘severe’ autism is for an individual depends on the environment, so stereotyping autistic people into groups has already been abandoned in good autism practice. Research into causes deviates money and attention from solving the real priorities of the autistic people, such as changing attitudes in society, employment, life skills and learning.
It is not clear which autism subgroups will be the focus, but from the study communications it seems they want to identify the ‘syndromic’ cases. Are the researchers developing a test that would this subset? Prof. Baron-Cohen warns against a test being unspecific and affecting the prevalence of STEM talent. So where will researchers draw the line for testing, e.g. males who study mathematics at Cambridge, as Baron-Cohen mentioned, or would it be broader? Who gets to decide?
We should campaign for dignity and human rights for all ‘subsets’ of disabled people and challenge the dehumanising narratives that both Baron-Cohen and Geschwind engaged in, asserting that autistic people lack the basis capacities to be human.
As Spectrum 10K research partners intend to allow private companies to exploit the data, who will control what these companies can and can’t do? There is no steering group at present, so there is no control by and accountability to the autistic community. More broadly, the tampering with humanity’s genetic diversity should not be allowed to go ahead without a due debate and governance mechanisms.
But what the study is likely to lead to are avenues for prenatal tests, meaning prevention, meaning selective abortions. As the major driver for prenatal tests is the perceived ‘cost’ of autism, which in the UK is estimated at £32 Billion, the pressure to develop autism cure or prevention will not recede and the Spectrum 10k study might be viewed as an opportunity to take control of how data and DNA could be stored and used. There should be a majority of autistic researchers on the study steering committee.
Prof. Baron-Cohen’s sounds somewhat contradictory: on the one hand, he is conducting a study that could lead to a prenatal test, on the other he discusses the link of autism genes to strengths and talents in systemic thinking and STEM and studying maths at Cambridge.
We know that stigma and certain cultural biases play a huge role in parental decisions. In China the one child-policy together with a bias towards a male child lead to systemic abortion of female foetuses, resulting in a young generation where males outnumber females by 24 million. In India, many baby girls are aborted due to pressures around dowry and preference for male children. A prenatal autism test is a real risk of introducing autism eugenics.
This is not just a concern for autistic people, as autistic genes lead not just to mathematics, but are associated with higher parental IQ. It gives the capacity for independent thinking and innovation, the ability to explore unpopular ideas, notice details that lead to new discoveries, as well as pursuing ideas without filtering them through the lens of how other people will perceive them. Major innovators responsible for paradigm shifts in research and technology, such as Isaac Newton, Charles Darwin, Tesla and Thomas Edison, entrepreneurs such as Bill Gates, Steve Jobs, Mark Zuckerberg are purported to be autistic. A prenatal test for autism will not just deprive us from innovations, but would change the very nature of humanity. It would make us more prone to groupthink and compliance, eliminating exploration and ground-breaking unpopular ideas. Innovative thinking is one of the most prized human capacities. A eugenic test for autism is therefore not just a concern for autistics, but for society as a whole.
More broadly we should widely discuss and reject the eugenic ableist assumption that human value is only measured by their economic contribution in our capitalist system. All disabled people add to the immeasurable richness and diversity of humanity and should be respected and protected.
The autistic community has petitioned for the Spectrum 10K sampling to be stopped and boycotted. Due to this pushback the study has been halted on 11 September to undertake a wider consultation. This is an opportunity for autistic-led organisations to unite with the wider community and provide for safeguards and accountability. The study in its current form should be stopped until such mechanisms are established. Autistic people need solidarity from the wider community to stop the dangerous tampering with human genome.
At the same time we should continue to promote a better understanding of autism in society, better acceptance and accommodation, and combat ableism. We should use the government’s Autism Strategy priority to run the autism acceptance campaign. Autistic-led organisations should lead the way in demonstrating autistic people’s strengths and talents and contribution to society.
Petition https://t.co/NkeoZjORV2?amp=1
Alan Watts on eugenics – https://www.youtube.com/watch?v=j7kFK4JeUwM
