Good news- Spectrum 10k study has been postponed

I have posted the video, hopefully a lot of people will view it.

Yes I completely agree, we all need to be aware of the harms and implications for our community. Quite a lot of people are misinformed about the study.

Yes.  Can't hurt and I think we're right to be concerned.  Whilst we probably can't prevent it, it's important that people decide about it with their eyes open.  

And apologies - I'd do it myself but am out and about and my phone is a bit hitty missy flipping between applications at the moment.  

Do you think I should post the link to the video in a new post to make everyone aware?

Yes, I have heard the unfortunate news, thanks for the link. I don't know Spectrum 10k can be stopped in its entirely because last year all of our autistic advocates campaigns and work just postponed the research. Our autistic community came together before to try and stop the 10k study, so maybe we can do it again?

Unfortunately it seems to have bounced back 

www.youtube.com/watch

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.

That is one study, in statistics -dependent studies a single study is rarely definitive. This paper gives a rather different spin, though it found genetic factors to be of more importance than environmental: https://pubmed.ncbi.nlm.nih.gov/25738232/

We know that for a small number of people there are certain genetic deletions and duplications that cause autism. The problem for most autistics is separating the wheat from the chaff, deleterious from non-deleterious alelles and other genetic differences. That is going to be very difficult. As autistic traits are entirely embedded in humanity at large, I thinkthat a straightforward, "there is an X% chance your child will be autistic" algorithm is unlikely. More likely will be, "your child has an  X% likelihood he will be an excellent visual artist, a Y% chance he will be a gifted mathematician and a Z% chance he might be autistic. How do you want to proceed?" This is far too close to "designer baby" eugenics for it to be acceptable to most societies. The interrelationship of autistic and gifted traits will make extirpating one without extirpating the other almost impossible.

I think that microarray screening will be expensive, at least in the short to medium term, and this will restrict its diagnostic use. The paper you cite was not using microarrays in a normal clinical setting - it was not a service - and it was looking at quite obvious departures from normal foetal development. Autism is considerably more complex and subtle.

That’s not my understanding and tbh the research Ive read doesn't support it https://pubmed.ncbi.nlm.nih.gov/26709141/

not having a simple yes no answer isn’t an issue. If an algorithm can tell parents ‘based of your child’s genes there is an X% chance he’s autistic.’ Some parents will still abort on that basis.

as for micro arrays for prenatal screening this is already very much in the works for other conditions bmcpregnancychildbirth.biomedcentral.com/.../s12884-020-03368-y

Not really.

Down's syndrome is wholly genetic in origin, autism has environmental factors in addition to genetic ones. Some identical twins exist, where one is autistic and one not. A genetic test would not have any direct application to the environmental causation aspect of autism.

While micoarray testing is feasible on a research scale, it would be expensive to produce and use for diagnostic purposes, and is unlikely to produce 'yes/no' answers.  Most autism, or its genetic component, is caused by a particularly high concentration of alleles that are found in the general neurotypical population. Any microarray-type test result is going to be very complex and difficult to interpret; the effect of each individual allele would have to be ascertained to separate the deleterious from the advantageous. Then the cumulative effect of many different alleles would have to be estimated and a clinical opinion given. Add to this epigenetic involvement in autism is very likely, therefore a whole extra level of complexity may be needed for any test. This is what I meant by a "simple screen" being unlikely.

your first point is rather wrong. Micro array and sequencing tech is becoming more and more available. Testing for 1000 mutations at once is no longer that hard. The 2nd point is more complex, there seems to be a significant overlap between pro intelligence and pro autism genes. However with enough research, the kind of research this study is doing, you might be able to infer which combinations of genes lead to autism and which to intelligence (and which to both.)

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.

That’s true I see that, there was a failed attempt to change the law on this regarding Down’s syndrome I think? 

It’s an extremely complex issue. I mean we support women on abortion rights when those decisions are made for other reasons, when they they are not in a position to be a mother, and we wouldn’t necessarily ask questions about why. If I remember rightly in the case of Down’s syndrome the stage of pregnancy at which an abortion can be carried out is later but I can understand, as someone who has worked to support adults with Down’s syndrome and severe autism, and with all respect and compassion towards vulnerable adults, I can understand why women and families may not feel they can be the right parents to a child for whom the risk of severe autism is higher, just as when the risk of other factors effecting parenthood is higher - employment issues, poverty, age, any number of difficulties we would be empathetic towards women and families about in light of the right to have an abortion.

I say this not to be controversial but because I don’t think I can ever condone actions taken because of fear of knowledge. And to learn from people with differing opinions if I’m making a mistake. But even as an autistic person myself I have some faith that in a sufficiently educated society we will not experience an eradication of autistic babies when we know people on the spectrum bring such needed contributions to society. 

Indeed Down’s syndrome is an excellent example of this. Very easy to screen for because the anomaly involves an entire chromosome not just a few small localised mutations.

Down’s syndrome children are widely aborted so unless the government was willing to make aborting a foetus because it is autistic a crime there is always going to be anxiety about genetic analysis of autism. 

in fairness they very nearly did make sex selective abortion illegal so it’s not out of the question.

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.

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. 

Yes this is good news.

Good to know