Decoding the body: health data, genetic testing and hacking biological futures
Lydia Nicholas (UCL)
Paper short abstract:
A computer system must be open to users' understanding to be fixed or adapted. 'Lifeloggers' describe health as an operation of biological code; they open this system through technologies such as data collection and genetic testing, and leverage this knowledge to anticipate & modify health outcomes.
Paper long abstract:
Digital environments in which users work, socialise and learn are constructed by computer programs executing instructions. In such spaces knowledge is skill is power. Those who understand the system can identify and fix problems or adapt the system to suit their needs. Those who do not must blindly follow its rules, no matter how ill-fit to their circumstance, and are helpless in the face of system failures. My previous research into the maker movement explored how experience with the affordances of computer programming affected informants' relationships to physical possessions, particularly expectations that objects be open- both to comprehension and physical modification. Adapting or 'hacking' a mass-produced possession demonstrated their understanding, their power and their identity as a responsible, creative owner. This paper discusses communities who explicitly extend this project from possessions to bodies. It draws from interviews, online surveys, workshops, reading marketing materials and personal accounts, and uses Foucault, Armstrong's Surveillance Medicine, and Benson on body projects. It examines the means by which being healthy is understood and performed amongst people engaging in health data collection often described as 'lifelogging' or 'quantified self'. Amongst informants health outcomes were described as the operation of bodies executing instructions- the nexus of which was understood to be genetic code- and processing inputs such as diet, lifestyle and training. Responsible body-management was a project of opening this system to comprehension through technologies including data collection, trend analysis and genetic testing, then leveraging this knowledge to anticipate and alter the body's future.
Being, being human, and becoming beyond human