UK genetic study on autism

Statement from Autistica:

https://www.autistica.org.uk/news/biological-research

 

Does anyone know if the Autistic Society have said anything since the terrible statement they put out? (I seem to recall this happening)

 

I've just been copying relevant links from the Autscape chat list. This is the latest one from the NAS:

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

 

Apparently, the study has been 'paused'...

https://spectrum10k.org/statement-10th-september/

 

I saw this today - another "pause" - if only we understood what this meant in British Medical Establishment English!

 

I'm just posting this link here for now as someone in the autism community mentioned it, but it also has relevance to ME research. I'll repost it on an appropriate ME thread when I find the most relevant one (not sure if it has been discussed on the forum, it relates to the release of sensitive research data):

https://strasbourgobservers.com/2010/11/22/european-court-of-human-rights-gillberg-v-sweden/

 

Yes absolutely.
Extremely distressing.


Autism charities and organisations and celebrities have failed to practice due diligence before promotion or endorsement of this study.

Thankfully a few spotted problems day one but I can’t remember which ones right now and too many did not. Or chose not to.

Ethics of researchers x
Ethics of study design x

Principal objections are

•no informed consent for children. DNA is out there.

•questions of informed consent for all adults, young adults, elders and especially anyone with learning disabilities.

•inability to safeguard data against use as a tool for eugenics.

• guaranteed benefits for researches none for subjects.

Ooff designing a study and not bothering to come up with a single positive and concrete outcome measure for anyone other than yourself!?

• Inevitable harm for subject population. Extreme harm to particular participants very possible. As above.

• Autistic community can receive ‘Welfare’ ‘improvement’
right now today. If government is willing to support disabled people. They are not.

Study designed to add to ableism by finding out what is wrong rather than listening to what the community tells them is wrong. Lack of material resources.

If they find genes will this pay for care or access requirements?
No certainly not.

Genetic knowledge if genetic component discovered, could and certainly would later be used to help avoid autism by screening in pregnancy and terminations on the basis of these results.

It will happen because at the moment and for a long distance into the past and now there has been constant work to remove people considered deficient in some way from society.

Absolutely certain concrete harm of creating tool for eugenics.

Virtually guaranteed harm. Certainly realistic expectations that once such at tool is made available it will be used specifically for Eugenics.


This catastrophic outcome is avoided if no discovery of genetic components to autism made in this large study.

A study they wouldn’t be perusing unless they had a pretty good reason to hope for genetic findings.

So we can’t confidently rely on null findings to protect autistic people.

Admission by researchers that they cannot prevent positive genetic findings being utilised for eugenics once their data is collected it is available to others. To do with as is most profitable.

Even if the study designers do not plan to or support such use.

The perfect design of this study for eugenic purpose suggests that they absolutely do support such a use.

Actions past and present speak louder than words of reassurance designed to gain trust and cooperation.

But it doesn’t matter if they do or not. Fact over opinion or feeling. The study does put autistic people at risk in many ways.

So if they ‘forgot’ to account for or safeguard against negative outcome and also
made a ‘mistake’ ‘accidentally’ stacking the deck against the interests of their subjects and failing to come up with a way to benefit them?

These Researchers incompetence is off the charts.

They should be declared unfit to practice in either event. Conflict of interests.


I would like to find a comprehensive article/blog covering all criticisms in an accessible format.

If anyone has sees one let me know. I don’t want a both sides article. The study is not fit for any humanitarian purpose.

At the moment the best information I’ve seen is in tweet threads under tags as above quote from Ariel.

The similarities between ME politics are so numerous.

We could all learn a lot from studying the overlap.

I am thinking of all EC s efforts to help the poor “Chronic Fatigue” children…….


All the missing outcome measures of harms

Check out below!!!

https://journals.sagepub.com/doi/abs/10.1177/1362361320965331

EDITS: apologies everyone I am having great difficulty with devices software and my brain.

 

[QUOTE="Ash, post: 373605

I would like to find a comprehensive article/blog covering all criticisms in an accessible format.

[/QUOTE]

Ps

Please could someone who knows how perhaps share on here two or three threads from Twitter to help explain the background to those out of the loop?

Many thanks everyone for talking about this here.

Such an important subject. Xx

 

Interesting. It appears very similar things are happening in autism research than in ME. It appears that the experts on autism may be barely, if at all, more knowledgeable than our BPS overlords are and the whole field may be stuck not out of difficulty but because of the usual weird cultural baggage and the benevolent dictatorship model of medicine.

Seriously health care is in dire need of emancipation, as badly as the move from hereditary dictatorships to democracy. This is a fundamentally unjust and broken system. Benevolent dictatorships never work out, this is as best a proof as it can get, that even in the best circumstances it all breaks down for the same reason: dictatorship models, even benevolent ones, don't have to listen to a damn thing, and usually don't. Whenever you break the feedback mechanism necessary to function, a system simply ceases to function.

https://twitter.com/user/status/1436705043323842561