Abstract This paper explores our collaborative STS and anthropological project with type 1 diabetes (T1D) hardware “hacking” communities, whose work focuses on reverse-engineering and extracting data from medical devices such as insulin pumps and continuous glucose monitoring systems (CGMS) to create do-it-yourself artificial pancreas systems (APS). Rather than using these devices within their prescriptive and prescribed purposes (surveillance and treatment monitoring), these “hackers” repurpose, reinterpret, and redirect of the possibilities of medical surveillance data in order to reshape their own treatment. Through “deliberate non-compliance” (Scibilia 2017) with cliniciandeveloped treatment guidelines, T1D device hackers deliberatively engage with clinicians’ conceptions and formulations of what constitutes “good treatment” and empower themselves in discussions about the effectiveness of treatment guidelines. Their non-compliance is, however, neither negligence, as implied by the medical category of patients who fail to comply with clinical orders, nor ignorance, but a productive and creative response to their embodied expertise, living with a chronic and potentially deadly condition. Our interlocutors’ explicit connections with the free and open source software principles suggests the formation of a “recursive public” (Kelty 2008) in diabetes research and care practices, from a patient-centered “medical model” to a diverse and divergent patient-led model. The philosophical and ethical underpinnings of the open source and collaborative strategies these patients draw upon radically reshape the principles that drive the commercial health industry and government regulatory structures.
Juvenile Diabetes Research Foundation Artificial Pancreas Consortium Update
