We are working on the ethics documentation and the pathway to consent for the OPENCARE community members to be… The challenge, as you know, is to keep it as lean and understandable as possible, while keeping it legally viable. The solution is not obvious, and the scenario is complicated by the ever changing normative landscape. To tackle the challenge, rather than a defensive approach we are pursuing a transparent and dynamic solution, that would preserve the community ownership of the conversation/information space.
Meanwhile, we are trying to clarify the boundaries of EU projects in this respect, as a few puzzling instances (like http://epilepsy-database.eu/) have been discovered during a quick field study…
Since you mention it, did you have the occasion to invite Loretta? I remember we told her about the date of the kick-off. Should we make this more formal? Maybe @OlgaIvanovaUB knows more about the standard “protocol” …
Loretta was invited formally (well, I mean explicitly). She will be with us for part of the day in the morning.
I think the protocol for this stuff is very leaky. We need to fly close to the Commission to create maximum value, so I plan to make an extra effort to keep that conversation going, not just to tick boxes.
@alberto, even though it is still work in progress, as we converge on recommendations, and algorithm for funnelling, I believe it would be valuable to have a direct channel with the developers working on the platform… can you share with me their names, and disclose (also in private, if you prefer) their contact details?
Sounds funny, but I can’t figure out what this is. My curiosity was pinched when reading you need to channel with the platform developers. Let’s make sure we discuss about this in Bxl. Could we potentially help?
Maybe referencing the language used in private communications with @alberto made it sound more obscure than it actually is.
Here we refer to those procedures needed to inform the users about the implications (good and bad) of sharing personal data and narratives on OpenCare’s platform, about how to be informed on the uses and accesses to these data, and how to withdraw (or to which extent withdrawing would be possible), or apply for use of others’ data/narratives/ideas…
These are rather standard operations if one adheres to classical model of informed consent “have you read and agreed with the terms”-“yeeees, of course =P”, but in line with the community spirit we would like this to be engaging and transparent, just as any other step of the participants ownership of the project.
…and we are discovering that common practices, as it often is, are driven rather by fear than by the recommendations of laws and principles. But experimenting in this field is, unsurprisingly, sensitive.
Of course, we would love to discuss this in Bruxelles with you all, and if we can interact with other activities and blend what we are designing within other processes to make it more seamless, that would be fantastic. Just as I am keen to think the network algorithms (for example) could be used as a part of a “ethical”/phenomenological sandbox for our purposes.
