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The latest on Salvatore Iaconesi: the continued momentum of open-sourcing cancer cures

Posted by: Kate Torgovnick May

“This is my brain cancer. It isn’t nice,” says Salvatore Iaconesi, the engineer, artist and TED Fellow who recently opened up his medical files to the world, crowdsourcing cures of the medical type as well as those for the soul. In this just-released talk from TEDxTransmedia, Iaconesi explains why he made the decision to release his records via his website — to maintain his sense of humanity.

“Your life really does change. It becomes a procedure,” says Iaconesi in this powerful talk. “You cease to exist because you become a patient. In more than one way, you’re not a human being any more. You’re replaced by your clinical records. Yes, those records are talking about you, but they’re really not talking about you. They talk about some of your body parameters, but their language is different than the language of human beings.”

In this talk, Iaconesi outlines the staggering results of reaching out to the world for cures: 600 poems, 35 videos, 15,000 email conversations and counting. The New Scientist recently created a gallery of some of the artistic “cures” that Iaconesi has received, including a sculpture of his brain tumor created in Second Life by artist Patrick Lichty and a performance piece created by Francesca Fini inspired by the magnets used in brain scanning.

Patrick Lichty’s rendering of Salvatore Iaconesi’s tumor in Second Life.

Iaconesi tells The New Scientist that the response from medical professionals has been exciting, too. “I have been able to become an expert in neurosurgery and neurology. Through this kind of complete openness, I could access thousands of people who have provided me with their knowledge, their skills, their testimonies, their life experiences,” he tells the magazine. “Roughly 60 neurologists, neurosurgeons and radiologists contacted me suggesting techniques for surgery and for treatment. They are even talking to each other.”

One of the medical professionals who has been most helpful is TED Fellow Jimmy Lin of the Rare Genomics Institute. As it turns out, Lin is the geneticist who did the first genome sequencing for the very type of brain cancer that Salvatore has, glioblastoma.

Iaconesi recently reached out to Lin with good news — that the latest magnetic resonance imaging shows that the tumor is not growing and that he might be a good candidate for radical surgery. Lin offered to give a second opinion, and has also volunteered to help Iaconesi sequence the genome of his tumor after surgery, in an open source platform.

Overall, Iaconesi says that all the input — artistic, personal and medical — has helped him created his plan for treatment. “It’s a strategy that goes around the world and across thousands of years of culture,” says Iaconesi in his TEDx talk. “No one commiserates with me — no one is sad, and everyone is doing something. And most important of all, everyone involved is really feeling part of the human society. This is a good use for technology.”

For more reading about Iaconesi and the open-sourcing of his cure:

Francesca Fini’s magnetic art performance inspired by Salvatore Iaconesi.