Open Source Cancer. Brain Scans and the Rituality of Biodigital Data Sharing

Through the website La Cura (the cure), the Italian designer and hacker Salvatore Iaconesi open sourced his brain tumor and mobilized hundreds of thousands of peers through a digital platform. His condition was turned into a global performance. In order to do this, he had to hack his medical records and convert them into open formats, to make data easily readable and shareable, as well as to construct an inclusive understanding of the word “cure”. With this case we propose the concept of a “biodigital ritual of sharing”, a protocol or script adapted from hacker cultures’ public practices. While in the context of medical institutions data represented an objectification of the body, their reinscription through the ritual helped symbolized the need for a more socialized experience of cancer. Against techno-determinist utopias of distributed innovation, we highlight how open source and crowdsourcing can be seen as dense biopolitical symbols rather than mere distributed technical solutions. We also suggest that, when facing illness and disability, digital cultures imagine and perform technologies as social and relational rather than bodily prosthesis