@panayotis got in touch with me and here I am. I will take some time to browse through the thread, but in the meantime, let me just point out one detail:
Of course, this is not it, as it would have disastrous consequences in terms of rights and freedoms.
If you browse through our projects at AOS and HER you will see that we have no such desire, but a desire to re-appropriate data , as individuals and as a society, to create new sensibilities and new types of actions. To do this, we need new aesthetics (that is, very precisely, new sensibilities and cognitive approaches), and that is why we use arts and design as a privileged tool for our actions.
There is a strong parallel with La Cura in this. Data, there, was a metaphor of our condition. La Cura, as a global initiative, is not to “find a miracle therapy for cancer”, but to “reframe what it means to be diseased”: from something which is just a matter of doctor/patient/medical_system (as it is now, even in the most advanced and “innovative” practices), to a process which regards everyone: disease is a commons, and everyone should participate.
When I fall diseased, my wife is diseased, too, because her life changes radically. My students are diseased, because I can’t do lesson for them. My grocery store is diseased, because I don’t go shopping anymore. The whole country is diseased, because they pay taxes (thanks god) for the national health service.
Instead, there is no vision of this in past and current initiatives. It is one who is diseased. And this is just not true, and this is exactly the way in which we will be able to confront with this notion.
Data, in this scenario, is a perfect metaphor, because it never leaves the “lab”. Whether it is in the hands of the medical system, or in private clouds, or whether it drives the platforms for patient/friend/family/doctor engagement, it is always in the “lab”, and it does not go out in the city, in territories, across relations. It is always clear, in this paradoxical point of view, who is diseased and we are not.
The idea of the Third Infoscape is exactly about this. To “measure” something (disease, in this case ) it is not sufficient to record data about a single body.
For example, in this vision, the doctor is also “diseased”. If you have any experience in pediatric oncology, and the high rate of psychological burn out suffered by its doctors, you will have no problem believing this. In the frame of La Cura, for example, this does not sound strange at all and the doctor can be address of curing, too, from the whole ecosystem.
The metaphor is the metaphor of the garden. There are multiple types of garden, the ones attended for (the geometrical ones, with administered flowers and plants) and what Gilles Clément calls the Third Landscape, which is a radically open source view of the garden, which includes the whole environment and all of its subjects as gardeners.
It is interesting how Clément does not give up the idea of the “gardener” in the Third Landscape. Rather, he describes this figure as “not uses rake and shovel as tools, but knowledge and the wind”.