Very interesting article, love it. Please let me comment on this: “We have not yet established any model for the rightful ownership of all this information.” Why? Until now, we had organ-based medicine. How crucial is the ownership of medical data by patients in such a scientific context? It is of little relevance. No patient is a trained organ specialist, and « 1.0 medicine » is built around this assumption. Now, here comes genomic « precision » medicine (« 2.0 medicine », including mHealth or eHealth), based on the knowledge of the human cell; not the human vital organ. At MIT I saw how you can digitize pretty much anything in biology. So if medicine is about the digitized cell and its genome, let me ask again: how crucial is the ownership of medical data by patients in such a scientific context? Crucial. “Changing medicine is gonna be dangerous”, Berci Mesko, “My Health Upgraded” (p. 63).
Geocentric and Heliocentric Systems, rings a bell? Shifting from the vital organ to the human cell could trigger conflict (doesn’t it already?) Will the main change come from the fact that billions of people, who have never been online, will finally be able to get an Internet connection? “Democratization of ideas hasn’t yet happened.” (Mesko). Democratization of medicine hasn’t either.
In traditional medicine, there was little room (if any) for digital players. But in the era of genomic « precision » medicine, new players will appear: parents cracking the code to get a diagnosis for their son, doing some mouse modeling of the disease with CRISPR genome editing (trying to find a cure) and building a platform to cure a whole bunch of diseases, like Mission Massimo, or Salvatore Iaconesi, Italian brain cancer patient and computer programmer, setting up new ways of brain storming, keeping up to date, researching and interacting — website La Cura. Such new players, also found in type I and type II diabetes, will be the Linux (open access) of genomics, or medicine, while Californian biotech company Illumina will be more like the IBM of genomics or medicine.