What’s wrong with England (and Spectrum 10k)

I just heard about what I think may be a brilliant example of what’s wrong with English thinking and why I feel England is really backward. I purposefully haven’t looked into it yet, and will only in a moment, but it strikes me as perhaps pretty typically English (and class/power-driven if you get what I mean).

I may be wrong. We’ll see.

Spectrum 10K.

It caused so much upheaval that the Wellcome Trust paused the project.

If I summarize it correctly, and I’ll find out in a moment, scientists in England – the birth country of eugenics where Francis Galton (who I think was a cousin of Darwin, you know, the guy who talked about survival of the fittest) came up with it – decided to start collecting the genomes of 10,000 autistic people WITHOUT ANY PRIOR COMMUNICATION WITH THE AUTISTIC COMMUNITY.

These bumbling researchers first need to go talk with the community, said the Wellcome Trust.

(Let me also guess that none of the researchers are autistic themselves. There’s a bigger chance that I am wrong about that – by which I actually mean that there may be a lab tech or lower-level researcher who is autistic, likely not one of the PIs – than that I am wrong about this having something to do with the research project being English.)


Here we go.

There is a Wikipedia page about it: https://en.wikipedia.org/wiki/Spectrum_10K

Where was I wrong? There was involvement from UCLA, but it’s UK-wide and led by Simon Baron-Cohen. Apparently, the project was criticized from the start.

(It would be typically English to then decide to forego communication and consultation with the “lowly” folks it concerns, wouldn’t it? Yes, I hate England and its stupid hateful abusive culture. Sorry. I am way beyond being able to still be objective about it, most of the time. Academically, it’s often more about beating itself on the chest, and pissing as many people off as possible than about actually achieving anything, communicating with the public and doing something well. Doing something well is so utterly un-English. It’s often seen as foolish and naive – “daft” – to do something well. No, that’s not just me who says this. The English work ethic sucks, and has sucked for a long time, with exceptional individuals and organizations as always acknowledged and appreciated.) (But I am glad that a lot of groups are currently striking here, with teachers now joining too. How can you have a good work ethic when you’re treated like dirt? When incompetence is rife? When people only get well-paying jobs because of who their dad is or how much money they put in someone’s pockets, not because of whether they are capable. All of that has gotta be part of it.)

This is what the National Autistic Society has written about the project:

https://www.autism.org.uk/what-we-do/news/spectrum-10k

This is what the NHS has written about it:

https://www.hra.nhs.uk/about-us/governance/feedback-raising-concerns/spectrum-10k-update-19-may-2022/

When I started searching, I initially had the impression that I had been wrong and that the study had first gotten approval, was then paused and later got approval again.

But no, IT IS INDEED CURRENTLY PAUSED FOR COMMUNITY CONSULTATION and this does come after a great deal of upheaval in the community.

In the country that invented eugenics…

That is a despicable, thoroughly unprofessional approach, is it not?

This is also a big failure on the part of the granting organization (the way its grant applications are formulated needs an update too), but as they’re directly involved, perhaps that is no surprise.

https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-autistic-traits

From https://wellcome.org/grant-funding/people-and-projects/grants-awarded/common-variant-genetics-autism-and-autistic-traits

https://www.stemcells.cam.ac.uk/people/pi/rowitch

https://www.sanger.ac.uk/person/hurles-matthew/

https://geschwindlab.dgsom.ucla.edu/pages/

Yes, I am angry.

No, I am not autistic.

Yes, England is the pits.

Yes, this is a BACKWARD, almost 19th-century, scientific approach. Exploitative.

But, as an attempt to be a little more objective, let me add that, yes, you sometimes see contemptuous attitudes in other academic research too, not just in England.

Yes, I hate England’s horrible abusiveness.

(Oh, and yes, I turned down a paid PhD position at the University of Southampton, albeit years ago. So you see that I am not quite writing this out of spite. I really hate England’s abusiveness and sad work ethic. I prefer working with the victims of this abusive culture, it seems.)

Yes, I’m known for often being highly critical. But I LOVE it when things are done well and/or brilliantly. And that, sadly, is so utterly un-English. I hate what having been stuck here for so long has done to me, in terms of the inevitable deterioration of my own work standard, for example. I hate it. I hate it.

Feel free to share your opinion below, please.

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