Is it a good idea?
The National Autistic Society (NAS), the self styled UK’s leading charity for people on the autism spectrum and their families, has announced a study called Spectrum 10k, launched 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). It has come under criticism immediately from Autistic advocates. Their concerns come under privacy, ethics and eugenics.
The good news in the NAS report. Under the heading “research is vital but…” thet state, “For many years, autism was mis-characterised as a disease or illness, and something to be cured. It is not.” Let me emphasise: Autism is not a disease or illness. So why are the NAS so supportive of a into research whose Co-Principal Investigator is Daniel Geschwind. Geschwind has affiliations with an organisation called Cure Autism Now, and guided development of the Autism Genetic Resource Exchange, founded by Cure Autism Now, and now a program of Autism Speaks. Autism Speaks is an organisation which is dedicated to wiping out autism.
To me finding out the genetic and environmental data that cause or affect different types of autism is a bit of a divide and rule tactic. Autism advocates are mostly looking for all autistic people to be accepted by society. If autism is divided it will be divided and make autism acceptance much harder to achieve as there will be several different forms of autism to campaign for separately. I am already upset enough to be angered by autistic people like Elon Musk who says that people with “Asperger’s syndrome” like himself should be encouraged while lesser people with “Autism” should be euthanized. (I call that murder.)
Anxiety disorder, Depressive disorder, Pain disorder, Epilepsy, Intellectual disability and others are not,as far as I am aware, part of Autism, non autistic have these too. Separating autistic people into groups according to comorbidities will not help, if you want to cure epilepsy, study epilepsy.
Spectrum 10k are “not searching for a cure” for the condition and that they are “ethically opposed to any form of eugenics”
Simon Baron-Cohen, Principal Investigator of Spectrum 10K said in April 2019. “there’s no way we can ever say that a future political leader or a scientist won’t use the research for eugenics”.
So there is a chance that the research will be used for eugenics, which you are ethically opposed to any form of. Why are you proceeding with it? Something does not add up here. There are very real questions about human genome editing. I am torn on this between the positions of ‘it should not be done’ and ‘it can be done but only under very strict guidelines’. We need to be sure that those who would edit unethically cannot get at the data.
At the end of August 2021 Independent 100 reported: The Times reported [Monday October 14 2019,] that Stellenbosch University in South Africa had demanded the Wellcome Sanger Institute returns DNA samples collected from indigenous tribes in the country, amid allegations that they had commercialised the health data. Although the Wellcome Sanger Institute have denied they had commercialised the data, they have not as far as I am aware said to whom the data was shared. Stellenbosch University sat that to the best of their knowledge the DNA samples have been returned.
In May 2019 an advert for a project coordinator for Spectrum 10k said that it was “part of a large genetic of 100,000 autistic people worldwide (the Autism Genome Consortium)”. The appointee will work with “charities and stakeholders”. How do we know that the data will be safe when the other groups in the consortium and the charities and stakeholders are as yet unnamed.
I will not be taking part. The risk of security breach from elsewhere in the consortium together with allegations against the Wellcome Sanger institute, the research based on a definition of autism which is how autistics behave when upset and the possibility that the research may be used for eugenics by future governments or scientists mean that this is not something I can support or trust. I have not linked to Spectrum 10k as I do not wish for anyone to be involved on my account.
Update: Since I wrote this I have noticed:
- That professionals have signed the Boycott Spectrum 10k petition, Including Sue Fletcher-Watson, Professor of Developmental Psychology at the University of Edinburgh, who in a tweet called Spectrum 10k ‘scary’ and the opinions of the protesters ‘legitimate community concern.
- There seems to be concrete change coming to the data-sharing policy in response to people’s concerns.
Spectrum 10k seem to be responding to people’s concerns after first dismissing them. In that case please publish your concerns now.