Note: the conversation was very interactive and the hackpad does not really do it justice. Anybody has notes or recollections, please add them. Easiest thing is to do it on the hackpad itself, then let me know and I will pull it onto this post. Comments here also welcome.
There is no operational definition for “health”, “disease” or any given condition. Psychiatry did not exist until states decided they needed a label to disable those that went against them. "re the police allowed to confiscate your robotic limb if it has an in-built phone, or a weapon? We are standing on completely new territory.
We have evidence that drugs precede the condition, and not viceversa. Physical activity is a simple hygienic measure to fix that, but we have Ritalin. Why?
There is this concept of “quality adjusted years of life”. It is calculated by survey: how would you rate the condition of being paralysed? Would you rather lose an arm or become blind? This translates into coefficient. If a doctor can extend your life by two years, BUT you’ll be semi paralysed, his beneficial impact is 2 years x the coefficient that translates a year of semi paralysed life into “healthy” life. Maybe it means 0.7 years or something. 90% of people, when they reach those conditions, revise their evaluation of how bad a condition is with respect to how they judged when they were “healthy”.
What is the process whereby this stuff is evaluated? It is definitely a negotiation. It is consensual. But it is not transparent by design. Take insulin: it is one of the life-saving drugs. It’s well understood: once you have researched it, you have it. When the IPR on insulin expired, the company developed a new, patented system to inject it, and then retreated from the market the old dispenser.
How could communities contribute to this?
Zoe: Biohacking labs are becoming very active. Some people are trying to manufacture a new type of insulin produced by E. Coli.
A lot of patients are very highly educated about their diseases. There is this interesting case about this Norwegian woman who discovered that the software in her pacemaker is buggy. We in the European Parliament should definitely encourage that research.
Massimo: many large corporations will encourage this and give you access to their patents for free. This is because they are outsourcing their innovation to small startups – and in the future maybe even to hacker collectives. When the innovation happens, they buy it back.
Grey areas of cheap open sourced sensors connected with local communities of hackers to set them up, and loved ones putting in the manpower.
Julia: If you stay open, you can probably stay under the radar with some solutions, and get away with them. Example: a woman built an app to check when women are most fertile. She got away with it until she tried to build a major company on top of it, they started asking whether that was a medical device that needed FDA approval.