Thread of the latest quotes by Simon Baron-Cohen about the #Spectrum10K study.
Autistic people, autistic researchers, and non-autistic researchers:
This consent form isn't very clear, and you have to say yes to giving your data to unknown future studies.
SBC: [image]
1/11
Autistic people, autistic researchers, and non-autistic researchers:
This consent form isn't very clear, and you have to say yes to giving your data to unknown future studies.
SBC: [image]
1/11
SBC: [image]
Notice the specific phrasing of "if that was the outcome Of Our Consultation..then we would" about not using DNA in the study.
Who's going to pick your consultants again? Is it you?
2/11
Notice the specific phrasing of "if that was the outcome Of Our Consultation..then we would" about not using DNA in the study.
Who's going to pick your consultants again? Is it you?
2/11
He says researchers should have a "wider debate in society" as if he's at all done this before?
I'm not sure if this is a new quote or old one, but he uses the term "autistic community" & in his last statement he included "autistic people and their families" in that term.
3/11
I'm not sure if this is a new quote or old one, but he uses the term "autistic community" & in his last statement he included "autistic people and their families" in that term.
3/11
Again, not sure if this is a new quote.
See the words "wouldn't want."
Just because you don't want something to happen, doesn't mean that thing won't happen, especially when Geschwind calls autism a "disease."
#NotADisease
Same words all over again. What benefit is there?
4/11
See the words "wouldn't want."
Just because you don't want something to happen, doesn't mean that thing won't happen, especially when Geschwind calls autism a "disease."
#NotADisease
Same words all over again. What benefit is there?
4/11
We should trust the #Spectrum10K study now because there's plans.
After recruiting over 4,000 participants for their project, with the goal to get 10,000 participants,
there's plans now.
Note this phrasing: "to see whether adjustments can be made"
5/11
After recruiting over 4,000 participants for their project, with the goal to get 10,000 participants,
there's plans now.
Note this phrasing: "to see whether adjustments can be made"
5/11
Note that there's no claim that things will change.
Just that they will plan to involve autistic people (in the future?).
And we should be.. grateful about that? That you plan to? After getting awarded a grant in 2018, advertising a study, and continuing to recruit?
6/11
Just that they will plan to involve autistic people (in the future?).
And we should be.. grateful about that? That you plan to? After getting awarded a grant in 2018, advertising a study, and continuing to recruit?
6/11
I just want to emphasize this quote again:
"Is the autism community saying no genetic research should ever happen?"
Autistic people and researchers in general have had very specific concerns, like #Spectrum10K asking for consent of the data for future studies.
7/11
"Is the autism community saying no genetic research should ever happen?"
Autistic people and researchers in general have had very specific concerns, like #Spectrum10K asking for consent of the data for future studies.
7/11
None of those concerns have been addressed, unless the researchers actually consult with autistic people -now- (not plan to) and consult with people who aren't already participating in the study and in support of it.
They're planning to. That's all. Nothing concrete.
8/11
They're planning to. That's all. Nothing concrete.
8/11
Reminder that the general public, autistic people, matter - their voices matter when it comes to studies because they're the participants.
So if your participants have a problem with it, you should take it seriously. Not say "we'll consult."
We have TOLD you our concerns.
9/11
So if your participants have a problem with it, you should take it seriously. Not say "we'll consult."
We have TOLD you our concerns.
9/11
It's clear to me that the researchers simply don't want to do anything about this now because they're already running the study. They're going to say the same thing, continue to be vague, & continue collecting (mostly autistic kid's I presume) DNA samples & medical records.
10/11
10/11
I recommend reading this whole article as it has some brilliant quotes in it from autistic people who have (surprise surprise) real legitimate concerns about the study.
verywellhealth.com/why-autistic-p…
11/11
verywellhealth.com/why-autistic-p…
11/11
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