Documenting our new procedures to acquire informed consent to participating in research

#1

The engagement and community management teams are doing a stellar job of eliciting interesting content. This phase of the work implied doing so via a plurality of channels: no longer just the online platform, which people find via web search or social media, but also targeted exchanges like interviews and physical events.

Our main process for acquiring informed consent to participating in research goes through a consent funnel. This is a little piece of code that will not let users of edgeryders.eu post unless they answer correctly to some simple questions, aimed at making sure they do not harm themselves by sharing information that should be confidential. This was received well by the evaluators of our proposal, and it continues to be in place. However, these new channels for acquiring content do not go through the usual process of signing up for an Edgeryders account and then posting, so they do not go through the consent funnel either.

There seem to be three of them:

  • Physical events. In the case of this one (not a POPREBEL one), @nadia explained what the event was for at the very beginning; to protect people’s privacy, participants were asked not to take pictures and to respect Chatham House rules.
  • Interviews. I imagine there are email exchanges where people are asked to be interviewed, they consent etc.
  • Forms for pre-signup posting. @hugi has sketched this process here.
  • Others?

I would like to document our process for acquiring informed consent in each of these cases. Once this is done, I will get in touch with our ethics advisors (Alberto Alemanno for POPREBEL) and request their advice. I have started a wiki to collect this information. It lives on the platform, rather than in a ad hoc document, because I think it should be part of every Edgeryders project.

Can you please help me to do that, @noemi, @nadia, @natalia_skoczylas, who else? :slight_smile:

Also ping @Richard.

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Notes after the team leaders meeting
#2

That looks wrong, could you check the link?

#3

Regarding the interviews in person, indeed, whenever I ask someone to tell me their story, I first inform them that this text will be used as part of the research, and it will be available on an open platform, and the person can get access to it and delete it, if they want to, at any point. I also stress the possibility of staying anonymous, so that they can disclose as much as they feel comfortable with.

And at the end, when the talk is transcribed, I would send it to the person for a review - with a deadline - to make sure everything is done correctly.

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Processes for informed consent to research
#4

Link corrected, sorry.

#5

Yes. Example: for the 2 interviews Tamara did in Serbia where she created accounts for people and posted their stories, we printed out the consent form and they signed it:

Processes for informed consent to research
#6

@natalia_skoczylas, can I ask you to put together the email threads where you are doing this? Or any other documentation you might have? In research, most people ask interviewees to sign a written informed consent form or something like that, but I imagine we will not have that, right?

#7

Great! Where are those forms? We should probably keep them in the office. Can I get hold of them?

#8

No, the consent was always given in person, and neither I have the emails still. I wasnt aware of the need to collect them.

#9

But, @natalia_skoczylas, when you send the transcript to the person, do you not do it by email? And do they not reply “sure, I’m OK with it”?

#10

For our content that is not posted directly on the platform via the register.edgeryders.eu or listen.edgeryders.eu or directly by the person who already has an account on edgeryders we have a four step process:

  1. Person is contacted by email with invitation to join us at the workshop on AI & Justice with link to the event page which contains an FAQ footer explaining that it is part of an EC funded project with grant number
  2. Person is interviewed
  3. Transcript is posted in a closed workspace on the platform (in lightly edited version to remove uhms and duuh sounds, connecting sentences etc. No words not uttered by person are edited into text.
  4. Individual is helped to create an account,
  5. Individual is then added manually to the group which has access to the closed workspace
  6. Once added they have access to an editable wiki containing the transcript and are free to edit it directly
  7. Once they are happy with it, they let us know and ownership of post is changed to them and then pushed out of the private workspace into the public forum.

Now we are following same process with the notes from the AI & Justice workshop.

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#11

ok so 7 step not four lol

#12

How does this step happen? They let you know by email?

#13

on the platform - usually as a comment on the actual wiki itself or via dm or via email.

#14

Indeed, but i also clean my mail quite often.

We did the same with OpenCare, and in that case i created most of the accounts and published stories on behalf of the interviewees but there was no requirement for me to collect their consent. I could probably try to do that retroactively, but it would take quite some time. Let me know.

#15

Yes, there is 1 page (green paper signed by both the 2 people Tamara interviewed). I put it in the ResNet folder.

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#16

Could we maybe start with a list of the people in this situation?

#17

yes, i will

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#18

Hello Alberto, sorry this took so long, here are the stories that I will have difficulties to get consent for now, or it will be impossible (in the Czech case)




#19

Thanks, @natalia_skoczylas. Two of them have been posted under their names, though – was that you creating accounts in their name?

#20

That’s exactly the case