An Open Source Cure to Cancer
People are understandably wary of publicizing their public health records. They fear not only that other individuals could access their private data, but that their health records could be used against them by insurance companies and potential employers. However, this widespread apprehension makes it difficult for those wishing to build big, comprehensive healthcare databases.
Salvatore Iaconesi, digital design professor at La Sapienza University in Rome and TED fellow, may have laid the first stone on the path out of medical secrecy when he posted his medical information to a special section of his Art is Open Source website which he calls “The Cure.” Iaconesi was diagnosed with brain cancer and would not accept the prescribed treatment of surgery and chemotherapy as beingthe only way.
“My first idea was to seek other opinions,” he said in the above contribution to CNN. “Maybe this hospital is wrong. Maybe there are other places that wouldn’t need to do surgery. Maybe there is a laser, a chemical, an ancient tradition, a shaman, a scientist, a nanorobot.
His reasoning behind publicizing and essentially open sourcing his condition was similar to the reasoning of keeping it confidential in the first place: the label ‘diseased’ sticks with one throughout all walks of life. Those who are diseased need not only medical cures but also spiritual cures, such as support and creativity from fellow scientists and artists. As a result, he requested his digital health information from the hospital and went home so he could share the information in an open source, collaborative arena.
His first obstacle was translating the data into a workable and sharable form. As a software engineer, he was able to open the Windows files and convert them into preferred open source formats but noted that those without the technological knowledge would find difficulty in using their medical data.
The point of large scale medical databases is that one can rely on the culminated knowledge of all of the doctors in the world instead of just a couple of doctors at a particular hospital. As a somewhat noted figure, Iaconesi was able to bypass the database form and go straight to fellow doctors who had second, and in Iaconesi’s eyes superior, opinions. For example, within a day of posting information to his site, a couple of Italian doctors outlined the potential surgical options, and TED geneticist fellow Jimmy Lin offered to sequence the tumor after its extraction
According to Iaconesi, the Italian parliament is considering providing more open access to medical records in the country, leading to more stories like this one. After all, geneticists and cancer researchers are always looking to add more to their datasets.