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Paper short abstract

This paper traces novel and experimental collaborations among pharmaceutical researchers, biotech CEOs, lawyers, and others invested in Huntington's disease research, as they push back against the extreme secrecy of the pharmaceutical industry, in order to 'speed up' research.

Paper long abstract

With potential profits in the billions, and an ever-increasing demand for growth, the pharmaceutical industry is notoriously competitive and secretive. Collaboration is tightly and punitively regulated by contracts, patents, product licenses, and nondisclosure agreements. A common justification for this is that the potential rewards (profit, prestige) will incentivise better research; however this is largely not the case. Instead, excessive secrecy leads to research delays, due to unnecessary and time-consuming duplication of experiments, lengthy publication and patent approval processes, and drawn-out legal battles.

This paper is based on ethnographic fieldwork with a network of highly dedicated researchers working on drug discovery for Huntington’s disease – a currently untreatable and fatal hereditary neurodegenerative disease. This network includes academic researchers, biotech CEOs, lawyers, and others, across various institutions and countries, who have been collaborating on scientific and infrastructural projects to ‘speed up’ research. In doing so, they are pushing back against the norms of the industry: seeking more permissive funding, negotiating less restrictive contracts with pharmaceutical companies, sharing data and resources, and actively creating new spaces and platforms for collaboration.

Importantly, these collaborations and co-operations are ever-changing – although some collaboration is facilitated by contracts or working agreements, this is not a fixed or official network. Rather, it is transforming and transformative, as researchers seek creative and novel ways of working together, which must nevertheless remain attentive to the demands of pharmaceutical companies and the needs and desires of patients, and responsive to the successes and failures of the science and the market.