This is the really telling part, I think, of this whole thing.
"we are in the process of setting up this committee."
So they have announced this study, but they haven't actually set up the committee of people who are going to have influence as to who can use this data.
"we are in the process of setting up this committee."
So they have announced this study, but they haven't actually set up the committee of people who are going to have influence as to who can use this data.
https://twitter.com/Spectrum_10K/status/1430198220244783105
This is actually scarier.
"We are defining not harmful as research that can POTENTIALLY improve the quality of life and wellbeing of autistic individuals."
It doesn't take into account that research that says this can have the potential to harm.
"We are defining not harmful as research that can POTENTIALLY improve the quality of life and wellbeing of autistic individuals."
It doesn't take into account that research that says this can have the potential to harm.
https://twitter.com/Spectrum_10K/status/1430198338075480064?s=20
I'm inclined to think this answer means "we have no openly autistic researchers on our research team" -
https://twitter.com/Spectrum_10K/status/1430198820030267393?s=20
They have an advisory panel with autistic adults, and they always have to have non-autistic parents of autistic people on it too, of course.
1. They don't hold power
2. I don't believe any of the autistic people are on the research team.
1. They don't hold power
2. I don't believe any of the autistic people are on the research team.
https://twitter.com/Spectrum_10K/status/1430198890888896517?s=20
And they may not have the science and/or genetics background (I might be wrong and they might but I feel like they would've said that if they did..)
that may be needed to influence the researchers or understand the data-sharing and research dynamics of everything.
that may be needed to influence the researchers or understand the data-sharing and research dynamics of everything.
Then they talk about gaining autistic children's consent and autistic people with ID -
They say they consulted "experts" - it's unclear whether the experts were autistic people with ID or not (again I feel like they'd mention that if they were).
They say they consulted "experts" - it's unclear whether the experts were autistic people with ID or not (again I feel like they'd mention that if they were).
https://twitter.com/Spectrum_10K/status/1430199477143474187?s=20
TW eugenics, research (please ignore if needed)
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Very sorry for tagging but I thought you might want to know that neurotypical researchers are going to end up doing eugenics again, though they say they are "anti-eugenics"..
info at #StopSpectrum10K
@Imani_Barbarin
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Very sorry for tagging but I thought you might want to know that neurotypical researchers are going to end up doing eugenics again, though they say they are "anti-eugenics"..
info at #StopSpectrum10K
@Imani_Barbarin
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