Do OpenCare participants have to go through the new consent funnel?


#1

Calling @matthias, and from @markomanka.

the users should be notified of how different the purpose of the two projects is compared to that of OpenCare, and:

  1. either be asked about their understanding of it (just the first question of the new funnel could do),

  2. or receive at least a message inviting them to read more about the project and its sensitivities

(the latter could be an entry in the platform where your considerations about the sensitivities are shared and offered up for discussion by participants as the projects evolve… the replies could then become part of the material to use for our auditing :slight_smile: )

The above is to emphasise that the landscape of risks is different, which has a value as “informed consent” also for your research.

It’s basically a yes, with an extra action taken by community managers, so @noemi and @johncoate. Which is actually good, because it doubles up as engagement (“we are going to be doing a new, exciting project! How do you feel about us using your content for it? Do you want to know more? etc.”).

Also cc @nadia and @hugi


#2

Do you mean “basically a no”, since they so not have to go through the new consent funnel but only be notified about differences?


#3

Of course. I stand corrected. Sorry.


#4

No problem. I just was confused, so I thought to ask for clarification.


#5

I am not sure I understand if we are legally obligated to send a notice or have them refill the consent funnel?

So you think this should be an open ended topic? if they are interested, they join, if not, we assume it’s all good?


#6

I am not sure, @noemi, it’s a community management problem. How would you solve it?


#7

If this is mandatory and we require concrete actions from users, I would go through email,

If not and we just need to be transparent, I would go with a post, and pinging everyone after,


#8

A post + ping has the advantage that we have an easy-to-find public resource on the ethics of participation.

We should, however, make a post that carries across these two projects as well as future research projects, like the consent funnel itself.