Good news- Spectrum 10k study has been postponed

I know there have been some concerns about Spectrum 10k shared on this forum. There is a now a positive outcome thanks the passion of autistic advocates, parents and the Stop Spectrum 10k petition. The Spectrum 10k study has been postponed and will include discussion with autistic people. This shows the strength of the autistic community and the value of innate autistic traits such as passion, hyper focus and determination.

Link to victory message on the petition:

https://www.change.org/p/university-of-cambridge-stop-spectrum-10k/u/29588536

Parents
  • I only just learned about the study from this post, but... and I know this will be controversial, but isn't greater understanding of autism a good thing for us? I understand the fears about eugenics, but so far as I know there isn't any technology sophisticated enough to choose what genes to "turn off" before birth. The closest I'm aware of is something called CRISPR, but from documentaries I've seen on the subject it cannot be used to make any kind of genetic selections about something like autism, or any form of learning disability or personality trait.

    I'm happy to be corrected by anyone more educated than me on this, but as someone with a lot of issues associated with my diagnosis of autism spectrum I only feel disappointed. 

  • They won't turn off the genes before birth, they'll just terminate pregnancies that would result in autistic children, just like they do with tests for other disabilities.

  • Autism is known to be complex, Down's syndrome has a 'simple' cause - an entire extra chromosome. Down's is easy - relatively - to screen for, Autism, being, as we already know, multifactorial will be almost impossible to create a simple screen for. Plus we know that some of the genetic factors leading to autism are beneficial, so removing autistics from the community would be counter-productive. All that stymying a study conducted in a liberal demorcacy (or several) will result in, is something similar, but worse, being conducted in China or somewhere else where ethics are non-existant. I am far from happy at this news.

  • Well the paper I quoted was actually a meta analysis of several studies but either way if autism is at least 50% heritable (and its probably a lot more) there is every reason to think many cases could be inferred from genetic analysis alone. Just because the same level of genetic analysis necessary to infer autism could possibly infer intelligence it doesn't mean parents would be offered that complete spectrum of information. As you say people might feel giving parents predictions of intelligence, even crude ones, might be a bit eugenics like but sadly far more people would be comfortable passing on a prediction of autism. 

    At the end of the day any autism 'test' would be a product with a one or 2 number output generated by a computer program no one outside of the manufacture really understood, certainly not the doctors giving test results to parents.

    They might use something like ensemble machine learning on the gene SNP results. X% of the neural nets say autism, Y% are indeterminate, this is associated with Z% likelihood of autism. Something like that is what they'd get back. Sure you could get the same SNP results and run them through a different set of appropriately trained neural nets to get a prediction of intelligence ... but even if anyone creates such a tool it wouldn't be offered clinically.

    The point about the paper on micro array screening I quoted is they were arguing for its adoption to replace screening that is already done using simpler methods. Let me put it this way. The chromosome micro array analysis is now common enough hospitals have information pages for parents explain why their children are being given the test. (www.nationwidechildrens.org/.../microarray-analysis-test) Biotech is getting cheaper. In ten years expect micro arrays to be routinely used in health care.

Reply
  • Well the paper I quoted was actually a meta analysis of several studies but either way if autism is at least 50% heritable (and its probably a lot more) there is every reason to think many cases could be inferred from genetic analysis alone. Just because the same level of genetic analysis necessary to infer autism could possibly infer intelligence it doesn't mean parents would be offered that complete spectrum of information. As you say people might feel giving parents predictions of intelligence, even crude ones, might be a bit eugenics like but sadly far more people would be comfortable passing on a prediction of autism. 

    At the end of the day any autism 'test' would be a product with a one or 2 number output generated by a computer program no one outside of the manufacture really understood, certainly not the doctors giving test results to parents.

    They might use something like ensemble machine learning on the gene SNP results. X% of the neural nets say autism, Y% are indeterminate, this is associated with Z% likelihood of autism. Something like that is what they'd get back. Sure you could get the same SNP results and run them through a different set of appropriately trained neural nets to get a prediction of intelligence ... but even if anyone creates such a tool it wouldn't be offered clinically.

    The point about the paper on micro array screening I quoted is they were arguing for its adoption to replace screening that is already done using simpler methods. Let me put it this way. The chromosome micro array analysis is now common enough hospitals have information pages for parents explain why their children are being given the test. (www.nationwidechildrens.org/.../microarray-analysis-test) Biotech is getting cheaper. In ten years expect micro arrays to be routinely used in health care.

Children
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