šŸ“— Ethics and Consent Process Manual

Documentation & Support Collaboration
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10

Have been playing around with the webinar add-on.

there you have the ā€œpanelistsā€ and the ā€œattendeesā€.

The former have video, the latter can only watch. Was thinking if we could use that to make the consent easier for bigger event. e.g. we only collect consent from the featured speakers and if a ā€œattendeeā€ wants to raise their voice and ask a question/join the panel during the call we send them the consent info sheet directly and have them consent to it in the chat before promoting them to panelist?

@amelia, what do you say to that?

11

This works as long as you post this process and consent form/information sheet at least 24 hours in advance of the call (ideally more than that) so that the attendees have enough time to consider whether or not to participate based on the information in that form.

12

ok, in that case disregard that idea

13

To be clear, they donā€™t have to sign it then, but it needs to be accessible to them so they know that this will be the protocol!

14

There are unfortunately still issues with the formā€¦ I am trying to solve it and will let you know when it is working.

15

Using Edgeryders Forms is this the one we will be using? Can it include the consent funnel requirements in the template?

16

Changed the details in the templates for the participant information sheet to remove chatham house rules and include instead :slight_smile:
ā€œWe record the call, transcribe the recording, and post parts of it on our forum. We only mention you by the Edgeryders username you have selected. If you prefer not to be mentioned by username, please let us know in advance of the call.ā€

This way we can actually ping people with their usernames in the transcripts. Better for SSNA. Checked with @amelia.

17

@MariaEuler, I recommend changing this like you changed it in the Participant Information Sheet.

18

we also added

ā€œIf at any point youā€™d like your contributions removed from the online forum, just ask one of the admins and they will happily take it down.ā€
to the participant information sheet templates

19

this is about real live events.

How do we want to handle those? Just replacing it with the line with the one below seems wrong since recording real live events needs more care or is it fine? Should we record real live events?

ā€œWe transcribe recordings of the event, and post parts of it on our forum. We only mention you by the Edgeryders username you have selected. If you prefer not to be mentioned by username, please let us know in advance of the call.ā€

ā€œIf the event is recorded make sure to inform the participants before and during the eventā€ ???

20

OK, team, this ongoing discussion about consent funnels is too disjointed. Iā€™ve been pinged about it on too many different places on platform, with too many specific asks without enough context. @MariaEuler and I also agreed in our call today that it needs to be better systematised.

I suggest the following:

  1. Create templates for the different kinds of research data-gathering events that you plan to have (e.g. one for in-person events, one for online events, and one for interviews) and save them in this Consent Process Manual. This work is already well on its way in the manual. Update them consistently here.

  2. Any conversation around editing the general procedure should be had here and immediately implemented in the Consent Process Manual.

  3. Any conversation around the specifics of the meeting itself (these should only be minor tweaks to each form ā€” if they bring up larger issues that you see potentially coming up in future events, they need to be discussed and documented here).

  4. Each specific instance of the form we use should be saved in the same place to create a database (e.g. a shared Google Drive folder, or a series of links on this Consent Process Manual, either way linked directly to this manual itself).

This way, we can make sure that we are building upon the work we have done instead of duplicating it, that we are doing things in an open, consistent, and well-documented way, and not making on-the-fly decisions about research ethics.

Pinging @alberto @nadia @johncoate @noemi @MariaEuler, and please ping anyone else who has been involved (@LauraRoddy, @andreja?)

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21

Hello,

I reached out to the EU Regions Week Organisers to request how they handle their privacy and how we could include our funnel.

Their recommendation was:

7. Who has access to your personal data and to whom is it disclosed?

Access to your personal data is provided to the Commission staff responsible for carrying out this processing operation and to authorised staff according to the ā€œneed to knowā€ principle. Such staff abide by statutory, and when required, additional confidentiality agreements.

The recipient of the data are the Communication unit of DG REGIO, contractors and The European Committee of the Regions.

In your particular case, we would suggest you to add in the session description a summary of how do you use the content of your session and insert an hyperlink to your policy, specifying this is only relevant to what happens during their session.

You may also share documents with participants by uploading them in the CMS. If you want to collect e-mail addresses for sharing documents with a restricted audience, you could also ask participants to either give their email addresses in the chat (but other participants can see) or you can tell participants they should write to a given address to say they want to receive the documents.

@andreja, if I supply you with the participant information sheet for that event could you make sure it getā€™s included there as they suggested?

They are already recording and publishing the sessions:

All sessions of the EWRC will be recorded by us and available on the website afterward.

Feel free to consult our privacy statement which is accessible from the link ā€œPrivacy policyā€ in the footer of the event web site: https://europa.eu/regions-and-cities/privacy-policy_en.

@amelia, could you check out this info sheet they use and see if we need more or if that is already covering the bases?

22

@andreja, can you edit the event description?

If yes I would suggest to just go with the base or what they already have and adding a link to our participant information sheet plus the note that by participating they are consenting to it.

Do we need their emails? Is it required for them to interact on the platform? If that is not required by the grant agreement or such, I think we might not need it.

25

The deadline for the changes in CMS is by today, so I already added everything regarding the workshop, speakers and the description. If you think that something additional is necessary I can try, but let me know what exactly do you want to add.

this is the final agenda, EURegionsWeek 2020_ER final Agenda.pdf (93.7 KB) so we can add it in the description or send me the attachment. There is no requirements from their side.

26

They gave me the answer only today, so that is very tight with the deadline for the CMS.
But do we need to add it in the CMS? Is having the link in the description enough? They already record and upload all of the sessions.

We would need to make a version of the Info sheet for this event.

For that I would need:

  1. the project reference code
  2. 2-3 Sentences about *ā€œWhat is the purpose of this researcherā€ in the context of this event.

This is the version for NGI:

Any other changes necessary for the Regions week?

27

I am not sure if this is something important for your work, for the EU regions week and our part is not because everything is covered by the Commissionā€™s rules - if something extra needs to be included we can add it, but the participants will only see the summary of the workshop before the registration so it should be there.

28

As a follow-up to my previous comment, here is at minimum what I need from anyone asking me questions about consent or ethics:

  1. What is the content itself? Is it a one-off event or call (and is this question/desire to use data in this way only relevant to this one event) or will this be an ongoing series where you want to do the same kind of storage, use, and analysis process in the future?

  2. What were the agreements in place with the participants before the event in terms of consent and use of data? (if event is in the future, what processes are you planning? if ongoing, what are participants used to?)

  3. What do you want to do with the data itself after the fact, and what are you hoping to get out of it?

I want us to be creating and documenting answers to these questions systematically, to also cut down on the amount of questions I get about consent without enough context that Iā€™ve either a) answered before or b) canā€™t answer because I donā€™t have enough information or lead time. We need to build some institutional memory and practices.

A rule of thumb for ethics is that participants have to know beforehand what you plan to do with the data they give you and have agreed to it, at least 24 hours in advance (but preferably longer). So if you ask me ā€œCan we do xā€ my first question will be ā€œhave you asked your participants if you can do that, and have they agreed to it, well enough in advance?ā€

29

Transcript should be its own new post, in my opinion.

Ideally a transcript would be separated into many different posts and comments, because this is going to be very difficult to code and create way too many co-occurrences. Is it possible to ask Kristof and Michal to post their parts as separate comments? we can create an account called ā€œaudienceā€ potentially to capture those audience comments, or just have a community manager post those.

30

Update to the pint 6 of the Participants information sheet regarding documentation:

6. How is the event documented? ( ATTENTION: Changes to this section )

This call is being recorded. The recording will be used for transcription, inform follow-up summary articles and can be published by Edgeryders in parts or its entirety.
If you are not comfortable with the recording of the conversation being published afterwards to further the discussion, you will have to abstain from this call.
If you do not want your name being mentioned in the summaries/recordings, please, use a synonym to join (for example your edgeryders user name) and inform us ahead of the call via the contact listed below.

31

Notes from Ethics Call with @markomanka , 2021-02-19T09:00:00Z ā†’ 2021-02-19T10:00:00Z

Present: @markomanka, @alberto, @noemi, @MariaEuler

(you can move these elsewhere @alberto, Iā€™m just tying them to the manual for now).

@rebelethno, we met with our (wonderful) ethics advisor today and got some very good advice on how to proceed with our work. See below (skip the first point as it is not relevant to our project).

Earth OS Consent Funnel/Tell Form Fixes:*

What happened

starting August 2020, Edgeryders started rolling out tiny, super-simple online form (URL tell.edgeryders-eu/12345) for people to sign up to events. These create automatically edgeryders.eu accounts, and post the answers to the questions in the form on the platform. Some of these forms, it turned out, did not enforce consent. Worse, they still set the value of the edgeryders_consent field in the database to 1. This means that there is no simple way to identify those users via API query; and also that, when people who created their account through those online forms, they will be allowed to post without having to go through the consent funnel. The issue was discovered in December 2020.

What we are doing

  • We fixed the problem going forward. Now all forms enforce consent.
  • We have gone through the forms; identified those did not enforce consent; and identified the user accounts created through those. They turn out to be 196. Only a minority are involved in research projects; we estimate that at least 130 came through EarthOS events.
  • Next, we have toggled their edgeryders_consent value to 0. This means that, if they try to post, they will now be redirected through the consent funnel.
  • The next step is for the community managers to go through the list, identify those who have made codable contribution and get in touch with them one by one, asking them for their consent. This can be acquired via a form, or via them posting one new post on the platform (which now enforces the consent funnel).

Ethics advisor opinion

This is prima facie an issue of compliance, rather than an ethical issue. The solution is good. If any of the participants follow up and ask about the procedure, then it becomes a question of ethics, and we proceed from there (with a clear roadmap of explaining the process).

Ethnographic Interviews

Two action items:

  1. Have a consent form that is more detailed than the funnel, describing the project and contact details (already done and linked in 3.1 of the Ethnography Field Manual).

  2. Have a periodic internal peer review on ethics. At least every two months or every hundred participants. Discuss any and all questions or issues that come up, and share best practices.

Participant Observation

Lurking (added to Ethnography Field Manual section 3.5):

  • ā€œnon-interferenceā€ is not a sufficient measure for ethical consent, but interference certainly requires disclosure of researcher status and information about project and data use.

  • The first step is to identify the context of the space ā€“ do participants think itā€™s public, private, or somewhere in between? What is their expectation of where and how the information in that space will be used? You have to tailor your disclosure to that expectation and not use information in ways they are not expecting or anticipating (and therefore have not protected themselves for).

  • If there are moderators, talk to them first before performing participant-observation.

  • If there is an effective way to disclose researcher status up front, do so.

  • If technical capacities prevent this, two steps are needed (and both should be followed anyway):

  1. Once material is used, disclose it at that point ā€“ make sure participants/the community has a way of accessing the results of the participant-observation.
  2. Internally peer review the information produced from these kinds of observational methods, and exercise more stringent caution and analysis of what the next steps can or should be in terms of use of the data (writeup, potential harms and consequences of doing so.)

The big picture here is that ethical participant-observation in any space requires the ethnographer/researcher to ensure they have a very good understanding of what the collective they are studying assumes tacitly about whether or not their activity or utterances are public, and whether or not they planned for a discussion or activity to be public and the information from it be publicly available. Our evaluations of this public/private line, which is a continuum, have to be context-enriched and decisions about ethical practice and use have to match informant understandings of where on that continuum they are.

We do not have to submit an ethics deliverable formally on this, but we need to document it clearly and follow these processes, documenting them as well as we go.

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