Thread by @AutSciPerson

Please share this thread widely.

I will be going through the Participant Information Sheet for autistic adults from #Spectrum10K

It says the purpose of the study is

"to identify genetic and environmental factors that contribute to autism and related conditions."

1/12

I'm skipping diagnosis requirement, how to use the DNA kit, if it's paid (you don't get paid), and who is eligible.

This is where I'm genuinely confused.
It says you can stop participating at any time, "but we will keep information about you that we already have."
2/12

I'm unclear if the sentence above is referring to just "information" or if it's also referring to the DNA samples, medical records, and questionnaires that were filled out.

I'm also confused if "stop being part of the study" is the same thing as withdrawing (I think it is).
3/12

Now if you look at the next section, 3.3 -
It says "We will keep data until you choose to withdraw."

I'm not sure the average participant would know the difference between "data" & "information" - it's unclear whether that is different, or if it's a contradictory statement.
4/12

Now we get to the DNA part.

They state that the DNA will be used to "search for structural and functioning changes in the DNA that may contribute to autism and related conditions"

& may be shared "with potential academic collaborators for future research"

No elaboration.
5/12

It mentions that they can use "either your entire DNA code or only parts of your DNA code."

They only have one line about future research & may use data in "future ethically approved research aimed to better understand autism, other co-occurring conditions, and wellbeing."
6/12

Then next are the 3 different options to withdraw. The first 2 (No further contact and No further access) both allow Spectrum10K to use the data they collected.

[Here they use "information and samples" which is even more confusing]

7/12

The 3rd withdraw option is called No Further Use.

It means they would "destroy samples" and would "only hold information for archival audit purposes." It's unclear what information they are talking about/would hold onto (does it include medical records?).

8/12

This option would mean that your data/samples/information would not be used in any future research.

They say "it would not be possible to remove data from research that has already taken place."

I would hope this only applies to submitted or published manuscripts?

9/12

They say that this "may" lead to improved quality of care "for autistic individuals and their families."

Not that I would expect it, but there's nothing under possible disadvantages about the risk of finding autism genes

& risk of info leaking is listed "extremely low"
10/12

This just seemed weird to me so I'm putting it in.

For some reason (I'm not sure if it's for particular medical conditions) the researchers might call your GP in "exceptional circumstances" to inform them about your health and safety. It's weird they don't call you 1st?

11/12

This is the last page showing how to contact them if you have any questions - at

[e-mail]

.@Spectrum_10K
Can you please answer my question regarding the "data/information/samples" in this thread? The language seems relatively confusing.

#ActuallyAutistic

12/12

https://twitter.com/AutSciPerson/status/1430644561219661837?s=20

I didn't realize until .@Gateskp pointed this out,

but the Participant Information Sheet is probably the actual consent form for the study?!

(if anyone could confirm this for me that'd be great)

https://twitter.com/AutSciPerson/status/1430666920194363400?s=20

This is part of the information sheet for parents enrolling their autistic children.

If they are under 16 years old they don't actually have to provide assent.
If they are at 16 years old, or older, and don't have the "capacity" (their term) to consent, parents can enroll them.

@Gateskp Okay everyone, I figured out the consent form.

So there's a different consent form/webpage that you fill out. The info is the same I believe, but I'll put screenshots here.

The actual PDF file link is here -
join.spectrum10k.org/files/Spectrum…

"treatment for autism"?

1/

@Gateskp (note, not putting alt text because it's in the PDF file linked above).

It basically has everything in from the original Participation Information Sheet,

though I don't remember seeing the "and included on external research databases for future use" - just collaborators.
2/

So in theory in the future they could even created a larger database and pool from this?

And also they say "my anonymised data and DNA" - does that mean the term "data" is separate from DNA samples?

Because in the Withdrawing 3rd option, it said "destroy samples" not data.

This is the parents of autistic children under 16 consent form, it's basically the same -

There's no mention of assent & based on the info sheet, it's not required for the study.
I don't know if they even record whether they got assent from the child.
join.spectrum10k.org/files/Spectrum…

https://twitter.com/AutSciPerson/status/1430721916495613952?s=20

https://twitter.com/DrMBotha/status/1430630866020192261?s=20

https://twitter.com/AutSciPerson/status/1431254788507901960?s=20

https://twitter.com/AnnMemmott/status/1431156284653510658?s=20

Thread about the "easy read" version of the sheet (surprisingly it's not easy to read..) #Spectrum10K

https://twitter.com/sarasiobhan/status/1431006691374604297?s=20