Thread by @AutSciPerson

Just to clarify regarding the #Spectrum10K study..

Collecting genetic data of a very specific subset of autistic people who have official diagnoses will always be biased.

Using questionnaires made by NTs to describe autistic "behavior" will always be biased.
1/10

Something they note in their preprint is that SPARK didn't seem to have a lot of questionnaires. Most of them are parent-report.

Even if they have more questionnaires in the UK study, they will likely combine this with SPARK.

So any other questionnaires are going to be moot. 2/

I'm not sure how many samples they would need to correlate questionnaires to polygenic scores, but I bet it's more than 10,000.

I'm also assuming they'll use family without diagnosis as a control - which is not a true control. Don't remember if they do this in the preprint. 3/

#Spectrum10K is a basic science study that doesn't advertise itself as basic science.

The reaction would likely have been different if it did.

Claiming correlating questionnaires to a genetic variable will help "well-being" of autistic people is at the very least, a stretch. 4/

Especially when in the participation information sheet it states there is no direct benefit. So why couldn't they just be direct about that information?

They want to find the genes for autism.

It's like they know they can't say that out loud without a reason. 5/

What #Spectrum10K is (from my perspective)-

1. A re-contactable genetic database.
2. Will be combined likely with SPARK.
3. Most questionnaires are optional.
4. Want to find autism genes.
5. No direct benefit to participants.
6. No clear future benefits to autistic people.
6/

And just to clarify, one of the project descriptions, possibly from a grant, literally uses the term "re-contactable" in relation to the data from the study, as if that is the entire reason behind this database, that it can be used for more studies & combined with other data.
7/

But who would sign up if they knew the only reason for this was to use it in more studies afterwards that participants don't ever re-consent to, it's just automatic?

About the "Well all genetic databases do this" - Most of those are for CANCER to look for a cure, not autism. 8/

I don't think there's a major ethical issue in trying to cure cancer, is there?

The current standard for genetic databases actually DOES need to be looked at in the context of autism, because autism is not something most autistic people want to be "cured" of. 9/

Autism is not cancer or a disease, though it's often been compared to those by non-autistic people. And there's not the entanglement of misinformation fed by "autism experts" and NT parents and general doctors like there is with autism. It should not be treated the same. 10/10

https://twitter.com/stuffysour/status/1437295063483273217?s=20