Getting ready for the ethics audit

@marina: Alberto Alemanno is not returning my emails, so we need someone to run an ethics audit for POPREBEL, similarly to what happened for NGI.

Marco and ScImpulse did a good job on NGI and are obvious candidates, but we should follow our procurement policy. Can you take care of it? That means putting on the platform an open call, then I can help0 you with the selection process, then writing a contract for whoever we choose. Also ping @Nica FYI (no action required from Nica).

Last time we didn’t do the open call, remember, we just justified that Scimpulse foundation (Marco) is the sole provider. The only thing to prepare is the contract, I’ll do it now.

I would like to revive this thread, and get the ethics audit going. There are two things we need to do:

  1. Put together documentation supporting the audit. I intend this post to be part of it (its “Start here”, in fact).
  2. Call a meeting after @markomanka has had a chance to review the documentation.

Narrative

The main narrative behind the documents that we provide is the following. In 2019, we gathered data through our usual process of convening a (multilingual, in this case) online conversation. Consent to participating in research is governed by the consent funnel. However, in POPREBEL’s case, the PIs @Jan and @Richard were not satisfied with the quality and pertinence of the data (most of the discussion had even been in English, which means that certain groups in Poland, the Czech Republic and Germany were underrepresented). We intended to ameliorate this situation by organizing onboarding events in the countries in question; they would get the project in contact with informants with the characteristics desired by the PIs, and onboard then onto the platform. But, in early 2020, COVID hit, and we could no longer do that.

So, we pivoted to more traditional field work. UCL hired ethnographers based in the three countries in question, with @amelia in a coordination role. Most of the data collected in 2020, 2021 and 2022 came through this new avenue.

We normally distinguish ethics issues for this type of work into two broad categories: consent to participating in research and data protection. With this new project architecture, the two categories are watched over by different organisations.

Consent to participating in research

This is now the province of UCL. Interviewers have been pointed to the materials used by Edgeryders (for example, how they can withdraw consent). The PIs were kept in this loop. Consent to participation has been acquired, as I understand it, via consent forms prepared by UCL. Could I ask @Richard (I suppose it’s you, Richard?) to point Marco to where you are keeping your consent forms?

Data encoding and data protection

This remains the province of Edgeryders. The methodological choice we made is to encode interview transcripts as if they were forum threads. Each question by the interviewer and each answer by the informant was treated as a separate post in that thread (example). The interviewer took care of creating a platform account for each informant, and attributing to that informant her or his answers. Pseudonyms were used as platform usernames.

There are two differences with our pre-2020 process:

  1. Email addresses are no longer collected. Interviewers have been using one-time email addresses to associate to the accounts they created.
  2. These threads have all been placed into restricted forum categories, invisible unless to users logged in egderyders.eu with the authorization to access those categories.

@markomanka, is there anything else you need?

1 Like

We collect consent online, using RedCap software. The consent forms are produced in the three research languages. I have also included the original English text for @markomanka to read:

1 Like

Thank you @Richard very interesting read. May I ask whether this specific consent form has been part of the documentation approved by the UCL Research Ethics Committee (reference: 3596/003)?
There’s a couple of items that catch my curiosity:

  • The UK Data Service (an initiative/emanation of the UKRI Economic and Social Research Council, thus I suppose relevant here) seems to recommend a slightly different practice around research participants’ data withdrawals, rather than a time window ( see Withdrawing consent — UK Data Service )
  • the candidate participant is invited to state they understand the direct/indirect benefits of participating in the research study… but not the risks?
  • I am very fascinated by the item “I am aware of whom I should contact if I wish to lodge a complaint” where the information is not contained, which seems like a missed opportunity for clarity
  • the participants are offered the option to give up their right to be informed about the outcome (and the supposed benefits?) of the research in the item reciting “I understand that the information I have submitted will be published as a report and I wish to/wish not to receive a copy of it.”
  • the item reciting “I understand that the data will not be made available to any commercial organisations but is solely the responsibility of the researcher(s) undertaking this study” seems in conflict with FAIR principles in absence of a mention of a specific license (which would probably restrict purposes of use, and not profile of accessing party?) to be applied on the data… also that “solely” in the text seems in conflict with other items down in the form, should they also be ticked this would void at least one of them…?
  • the item reciting “I voluntarily agree to take part in this study” doesn’t seem to exclude forms of soft coercion or nudging, nor it collects information about how the volunteers came to the decision to participate.

Just asking for feedback here, to better understand how the document came to be, and whether more documentation is available about the procedure of obtaining the consent (and tracking the interactions around the consent)?

Thank you for bearing with me. Marco

2 Likes

Dear @markomanka

Thank you for your comments and apologies for the delay in getting back to you. As I am my School’s representative on the UCL Research Ethics Strategy Board (which is responsible for updating UCL’s ethics procedures), I am always keen to enhance my knowledge of best practice in this area.

I should explain at the start that the UCL Research Ethics Committee provides us with templates for the consent form and information sheet and we are expected to follow them as closely as possible. Some of the issues you have identified are what I have been advised to do by the UCL REC (see below). As a member of UCL staff, I am required to follow their rules. However, UCL continually updates its ethics procedures and I will feedback your recommendations to the Research Ethics Strategy Board.

MM: May I ask whether this specific consent form has been part of the documentation approved by the UCL Research Ethics Committee (reference: 3596/003)?
RM: Yes, that’s correct. The project has been approved by the UCL Research Ethics Committee and the consent form is based on the template provided by the UCL REC.

MM: The UK Data Service (an initiative/emanation of the UKRI Economic and Social Research Council, thus I suppose relevant here) seems to recommend a slightly different practice around research participants’ data withdrawals, rather than a time window ( see Withdrawing consent — UK Data Service
RM: This is the wording in the template we are asked to use by the UCL REC but thank you for pointing out the latest practice.

MM: the candidate participant is invited to state they understand the direct/indirect benefits of participating in the research study… but not the risks?
RM: Thank you for pointing that out.

MM: I am very fascinated by the item “I am aware of whom I should contact if I wish to lodge a complaint” where the information is not contained, which seems like a missed opportunity for clarity.
RM: This information is contained in the information sheet, which is sent to the potential participants after they have responded to the initial contact.

Information sheet (Mole revised).pdf (150.4 KB)

MM: the participants are offered the option to give up their right to be informed about the outcome (and the supposed benefits?) of the research in the item reciting “I understand that the information I have submitted will be published as a report and I wish to/wish not to receive a copy of it.”
RM: Participants can choose whether or not to receive the final report.

MM: the item reciting “I understand that the data will not be made available to any commercial organisations but is solely the responsibility of the researcher(s) undertaking this study” seems in conflict with FAIR principles in absence of a mention of a specific license (which would probably restrict purposes of use, and not profile of accessing party?) to be applied on the data… also that “solely” in the text seems in conflict with other items down in the form, should they also be ticked this would void at least one of them…?
RM: Again, this is the wording in the template we are asked to use by the UCL REC. I will feed back your comments to the REC.

MM: the item reciting “I voluntarily agree to take part in this study” doesn’t seem to exclude forms of soft coercion or nudging, nor it collects information about how the volunteers came to the decision to participate.
RM: The recruitment process comprises a number of stages. Initially, we e-mail potential candidates with the following message: "‘Hello! I am contacting you to ask if you would be interested in taking part in a short interview. I work as a researcher on an EU-funded project, which examines the socio-economic impact of the COVID crisis in Germany/the Czech Republic/Poland. The interview would be very informal, it would be completely anonymous and we can carry it out in person or online. If you have the time and interest, I would be happy provide further information.”
We leave it completely up to the potential interviewee to respond. If they do not, we do not follow up with further requests. If they express an interest in taking part, we send them the above information sheet, giving them as much time as they need to read it, discuss it with friends/colleagues and ask us any questions. Only once they confirm that they have understood the project and what their participation will involve and expressed their willingness to participate do we ask them to sign the consent form, reminding them that they can still withdraw from the project at any time. There is no soft coercion/nudging involved.

Best wishes

Richard

2 Likes

@Richard, this is great material. Once Marco has replied, we can probably put together a couple of pages explaining how we ran this project and what we learned from it, and put it on Zenodo as another small project output. It helps us for future projects, and I am sure that reviewers will appreciate it.

1 Like

Agreed!