There’s nothing for this right now. (The consent funnel is shown as a client-side JavaScript popup when a user clicks + New Topic, so it will be a portion of the logged-in users dropping out from category pages and the category overview frontpage.)
A reasonable solution to add this functionality would be to let the consent funnel JavaScript do its own API calls to Google Analytics upon being shown, and upon being accepted. If that is desired, please post an issue on Github. If we can do without it, let’s not do unnecessary work though …
Caro Alberto e tutti: avete fatto veramente il massimo, e questo è proprio il comportamento eticamente (e scientificamente) corretto. Avremmo un web migliore se tutti avessero la vostra attenzione e la vostra “cura” per gli utenti.
Avanti tutta
Wow Antonio, grazie per il tuo tempo e atenzione… Dopo di avere reazioni misti (?) al nostro email per prendere gli consenti qui mancavano, mi trovo un puo piu ottimista leggendo le tue parole.
192 consent-less accounts (of which one is a system account, created by @matthias to perform technical tasks, so 191)
110 give consent
71 No answers after 3 attempts at over 1 week long intervals
5 deny consent
6 NA - email addresses not found
We will now update the relevant field in the edgeryders.eu database. This will take care of the 110 consenting individuals for future research as well as for opencare.
Next, we will prepare an update of the harvesting script, used both to create the Graphryder database and to export opencare data for release. We can do this via a list of “special people” that have not consented to being part of the study. The content associated to these people will not be harvested. User IDs will be hashed in the data export, as agreed.
Now, the important question is: how do we build the list of special people? Re-reading the comments by @Mario.Falchi and @Antonio it seems to me that:
Mario recommends that the list of special people includes the 5 people who do not give their consent + the 71 who did not reply + the 6 who were unavailable.
Antonio thinks that, once we have made our best effort to acquire someone’s consent, we are more or less OK using that person’s content. There is a forgivable problem of form, but not one of substance. It follows we should only put the 5 dissenters on the list of special people.
First of all, congratulations for dealing with this so swiftly @noemi !
My call would be closer to what you identify as @Mario.Falchi’s, but I see his and @Antonio’s as emphasising two sides of the same coin.
Legally this is but a problem of form, which is resolved once the concerned people are able to express their opinions.
However, we should deal with the 71 people who did not reply under the precautionary principle. Let’s exclude them from opencare and further analyses, and obfuscate/erase their posts.
Concerning the 6 who did not share even an email address: had they actually posted? Should I understand this was an anonymous form of posting in which no online search could trace the nickname on other platforms, and no personal information was disclosed? If so, although I would exclude their postings from further analyses (but this is more of a personal call than anything, honestly), I would leave them readable online.
Now to the important part. Did the 5 who refused to consent share any comments with you about this decision of theirs? This is where we have real insights into our communication, and their perception of risks… and how the funnel affects users’ behaviours. - In pragmatic terms, we have to exclude them from opencare and further analyses, and to obfuscate/erase their past posts… but their replies to you could be excellent learning material for internal reflection. Not for research, since they did not consent ultimately, but for internal reflection, since if they so did, they offered an explanation spontaneously.
Concerning the 110 consenting late, it is them that I would place under special observation, to observe if anything in their pattern of communication/posting changed between before and after going through a consent.
Understood. But, sorry, we do NOT obfuscate or erase their posts. Edgeryders’s TOS are very clear as for that. What we do is not use their content for this research.
The 6 unreachable ones are most likely people who changed their email address in between. These are not people that were involved with opencare in the last two years; rather, people who had in previous years posted content that we found consistent with the opencare research questions. Edgeryders admits the use of one-time email addresses, but no one uses them that I know of. And, if we want to be fastidious about it, all posting in ER is anonymous, as we do not enforce, nor even recommend, a real name policy.
As for the question about why five people denied consent, I will leave the answer to @noemi.
they considered it spam email and/or did not comprehend the content
one is someone who consistently over the years has been lurking and opposing the general direction in which some people go - will detail more in private if you wish
the only interesting reflection I think, based on clarification exchanges I’ve had prior to some people consenting, came from the too vague formulation:
“I would engage in a conversation about my experience with NHS or equivalent”
For non native English speakers this “would” is not so conditional as intended – so they may think they are asked to, or need to, and if they consent they commit to something.
Upon re-examining the list of people who did not respond, we found several that we might have a direct channel to. So we are doing one last attempt to transform them into “consent given”. Stand by…
Thanks to @jason_vallet, we have an elegant solution that complies with ethical requirement while preserving a reasonable data integrity. It is solution number 3 described here. @markomanka, can you give us the thumb up?
Notes:
In the screenshots that you see, pseudonymisation has not yet happened. But it will.
We have acquired consent for a few more users, and this now really concludes the campaign. We plan to update the Edgeryders database accordingly today.
let me make sure about one thing: the posts are anyway published in clear on the platform, as the users who did not respond concerning their consent to research use, have anyway also not issued a request to remove the content they produced and PUBLISHED under creative commons (A problem with the ethical consent funnel, and how to solve it - #20 by alberto)…?
The current solution doesn’t seem sensible, let me explain:
we can consider the consent as a what it would be formally in medical research, and as such its absence prohibits us to use the data at all. No, we cannot use the codes associated, nor we should be using their topographic information (even in “anonymous” because basically it would take just a bit of work to re-identify the posts by comparing the links and the raw data available on the platform). According to this document → http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnog-anthrop_en.pdf ethnography should adopt an opt-in stance and refrain from presuming implicit agreement by publicity. This is a huge hit on the networks, I understand… but under this interpretation the solution should be sought with the partners/contributors.
we can consider the funnel as an informative process, adhering to what seems to be the use in humanistic research as acknowledged here → http://aoir.org/reports/ethics.pdf
The idea that the funnel did not exist in a void, but it was accompanied by TOS and plenty other explanations about the functions and uses of this platform and its content was also embraced by our ethical deliverables. In this sense, although a transition towards opt-in is recommended (see above), it is not prescribed, in recognition of the reality that consent is a process, not a point-contract, and that for a long observation like ethnography, community managers and ethnographers on the platform served as part of the consent machinery.
Thus, after discussing with our advisors, we see only two choices:
1 seeking consent or full removal from analyses,
2 full inclusion, in clear.
Since we have not read in full the entirety of the content on the platform, we are not aware of the feelings of the community and of those of the subset we are discussing here. The choice should ultimately be informed by the community managers.
To a first approximation, I see three cases. Recall there are 87 people whose consent is missing.
5 people have explicitly denied their consent. No question here, full removal.
Of the rest, quite a few are old time users that have long since disengaged from Edgeryders. The ethos of Egderyders has not changed; those contributions were already used for the first Edgeryders report in 2012. We have no reason to imagine they would object to opencare, but we have no way to contact them either (other than what we already tried). If you ask me, I am quite comfortable with using these. They do not appear to be super-important in terms of semantics, though, in the sense that they seem to generate fewer annotations on average than newer material.
And a few are people who shared stories in the context of onboarding workshops in Thessaloniki, Berlin, Brussels and Galway. On these, maybe @noemi and @amelia have more insights.
I would say that if @noemi and @amelia feel comfortable stating that these subject had been well aware of the goals of the platform, and the project, and of the publicity of the material they shared (which should very much be the case) then we fall in the 2nd scenario in which you can proceed with the analyses without the hypocrisy of obfuscating pseudonyms and contents in the dataset, when since the contributors did not ask for a removal from the platform and it would thus be lawfully still publicly available and amenable to de-obfuscation.
The users had anyway more than one source of information concerning the platform and OpenCare upon on-boarding, and the analyses are not structured so that one would in faith be able to predict exposure to specific risks from joining them. The funnel would have invited the user to themselves reflect on whether speaking of certain subjects, or associating publicly to other users, could have been seen as risky in their own contexts… but the same is informally communicated on on-boarding by the project members and/or by the community managers. At least to the best of my knowledge.
Yes, I would be comfortable with it, considering that the group of non-responses we have:
some people who have contributed stories in exchange for joining a workshop. We have documentation for the calls of participation and so by posting they knew they were engaging with a research project.
others have jumped in to leave a comment or two and have gone off since. For them there is little stake to refuse, but also too much effort to read the funnel/ answer emails/ come back online etc
others are part of our extended team in Milano, Bordeaux etc and some emails got lost on the way - I could not reach them through institutional address. they are of course aware of most of opencare.
Finally, given the trail of 3 email attempts I think its safe to say if any danger would have been perceived they would have answered negatively.
