If the main researchers on the #Spectrum10K project really want to do right by autistic people,
if they truly "mean well" -
This is what they would do right now.
1. Hire & consult an independent autistic researcher to create an ethics committee around this DNA database.
1/9
if they truly "mean well" -
This is what they would do right now.
1. Hire & consult an independent autistic researcher to create an ethics committee around this DNA database.
1/9
2. Listen to them and let them create an ethics committee which encompasses a diverse array of background of autistic researchers, autistic parents, autistic non-speakers.
Only autistic people.
2/9
Only autistic people.
2/9
3. Create a survey to send out to the autistic (not autism) community which asks for their research priorities, questions about their opinions and feelings on data collection of DNA, potential issues they would have with it, if they think it would be helpful, etc.
3/9
3/9
4. Using the ethics committee of only autistic people (both autistic scientists and non-scientists), have them create stipulations for whether other researchers can share the database, whether potential "autism markers" would be shared or not (is it going to be published?).
4/9
4/9
5. Actually agree to what the ethics committee decides - Which may mean not publishing the "autism" genetic markers at all and only focusing on the medical surveys.
6. (this should be higher up) - Hire actual openly autistic researchers to collaborate on the highest level.
5/9
6. (this should be higher up) - Hire actual openly autistic researchers to collaborate on the highest level.
5/9
The biggest thing -
Give autistic people authority over how their data will be shared and whether or not it -will- be shared to anyone.
Why can this not be stipulated on the consent form in the first place?
Why do researchers act like that is set in stone & cannot change?
6/9
Give autistic people authority over how their data will be shared and whether or not it -will- be shared to anyone.
Why can this not be stipulated on the consent form in the first place?
Why do researchers act like that is set in stone & cannot change?
6/9
Is it really that hard to hire autistic researchers as main collaborators?
Do you really not believe that autistic researchers exist in biology, of all places?
If you want us to trust you, you have to actually do something to earn that trust.
7/9
Do you really not believe that autistic researchers exist in biology, of all places?
If you want us to trust you, you have to actually do something to earn that trust.
7/9
You can't just create a committee of people (not even majority autistic) who agree with your plans and give you feedback on minor issues.
You can't just handwave us away.
You can't just harm this community and pretend like you never did anything bad.
8/9
You can't just handwave us away.
You can't just harm this community and pretend like you never did anything bad.
8/9
You're actively hurting autistic people's mental health by advertising and being involved in this research. Isn't that antithetical to what you want to do? I don't understand it. I don't understand why allistic people refuse to do what is right.
Why not do what's right?
9/9
Why not do what's right?
9/9
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