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

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

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.

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

yes, i will

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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)

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

That’s exactly the case

Hmm. This is not very ethical… :frowning: OK, we take them down.

This was exactly the same as with open care

Of course there was the requirement. We even went through a painful process of recovering the consent following a bug that had blocked the ethical funnel, we informed the ethics advisor, etc. etc.

Of course I did have their consent, it was just to speed things up

I know you did! But the thing is, we cannot prove you did. This will not fly in case of a third-party verification. Anyway, we will simply connect all the evidence on what we did, then explain the whole thing to our ethics advisor (Alberto Alemanno for POPREBEL) and do what he tells us to do. If he is cool with everything we did, we keep everything.

Great! If you want, I can then try to collect the agreements again for the Polish story, the last one - its a friend of a friend. Just let me know what consent would they need to sign now.

In case of the Czechs, all we can do is that Kuba and Jirka were also there so they could confirm there was an agreement. In the second Polish case, it was Mikoman’s talk on the street so no way to find the lady again.

Well, these cases are tricky. Because, when we look at it in the software, we see a normal user, that has gone through the normal ethical funnel. But what happened instead is that you created that user, and went through the ethical funnel on their behalf.

For physical events, Noemi has used this paper form. An email with the same content would also work, ideally addressed to you, cc to Noemi (edgeryders address). The email would say

  • I understand you use my content for research
  • I have considered the risks involved in sharing my views and alignment online, where others (such as the government or my employer) could access them. I feel in this context they are tolerable.
  • I understand the discussion on as an exchange of views. I will not use it to disclose sensitive information about myself, such as my credit card number.

An external auditor would not doubt us, but believe them. For her, we are all POPREBEL; she would only believe the person herself. However, this is a different case, in a way similar to participant observation. How does consent to research work in this case, @amelia?

You have to have documentation of formal consent in anthropological research if you’ve interviewed someone. If you have permission from your ethical body to waive written consent (in favour of oral consent) – I did this in my research because the physical written consent document would be the only thing tying the participant to their name — then you can go that route, but you as the researcher still have to have documentation of the date and time of formal oral consent. Since you’re not anonymising participants, written consent in this situation would normally be required. Regardless, this has to be arranged beforehand with the ethical body and with research participants.

As a researcher, you really know the difference between informed consent or not in your practice, formal ethical rules aside. Did they know when you were talking to them what you were going to use their contributions for, how they would be made public (and to what audience), and how their name would be attached to that contribution? Do they have continuous access to that information and the ability to request it be removed (up to a certain reasonable time in the future, which you agreed with them?) Did you clearly explain to them these arrangements and did they clearly indicate that they understood? Do they have the ability to contact you and someone above you in charge of overseeing your ethical conduct? Can you prove that you can ensure their data will only be used for the purposes they agreed?

If you did this and can show it, then you’re good. Otherwise, you can’t really ethically use the contribution.

@natalia_skoczylas, there is your answer.

This is very important, thank you - in my case, the conditions are true. As for the local connectors , they were trained by Noemi and Nadia, who I assume explained all the details to them - in which case, I’d also assume the connectors would always act according to the rules.

I would have to make sure with the person interviewed on the street if there was a contact exchanged, while the second problematic contribution is traceable and I could provide additional agreements, since the written consent was not waived in the case of POPrebel.