Paper Short Abstract:

This paper traces the co-constitution of medical and social ambivalence of tominersen, a first-in-class drug for Huntington's disease.

Paper Abstract:

In 2017, Roche Pharmaceuticals began enrolment in a clinical trial for the drug tominersen. Tominersen was a first-in-class therapeutic for Huntington’s disease (HD), a rare late-onset genetic neurodegenerative disease which currently has neither treatment nor cure. Following promising Phase 1 trials – and a great deal of promotion from Roche and various HD patient organisations – it was anticipated that tominersen would be the first real breakthrough in HD therapeutics. Tominersen was developed to be disease-modifying, aiming to delay symptom onset and severity, and in doing so prolong both life and quality of life. However, in April 2021, the tominersen trial was discontinued due to lack of efficacy and potential harm to participants. Prior to this, the relationship between Roche and major HD patient organisations and researchers had been largely positive and viewed as reciprocal; following the discontinuation, many in the HD community began to openly express anger, mistrust, and disapproval of Roche. HD researchers expressed concern about Roche’s intentions and lack of care and scientific rigour. This paper traces how the medical and social ambivalence of tominersen were constantly altered and co-constituted from 2017 to 2021, creating multiple and mutable forms of chemosociality.