Paper short abstract:

By comparing the legal tools and design choices of 4 clinical trial data sharing platforms, this contribution visibilises how open science platforms are situated within a political economy of data and innovation commodification, which shapes the priorities of knowledge production.

Paper long abstract:

At present, corporate actors exercise a large amount of control over what becomes data (i.e constitutive power) and what is done with this data (i.e distributive power). This is particularly stark in life sciences research. Enclosure of clinical trial data by pharmaceutical companies, combined with their sponsorship capabilities and existing neoliberal legal frameworks for patents and privacy, shapes the priorities of life sciences research itself. While there are legal mandates for data sharing, clinical trial data sharing platforms also attempt to redistribute corporate infrastructural control over data and knowledge in new ways.

This contribution analyses 4 such platforms - CURE ID, Project Data Sphere, the Yale University Open Data Access Project, and Duke Clinical Research Institute’s project on Supporting Open Access for Researchers. It compares the legal tools and design choices of these platforms to illuminate restrictions on data re-use, which in turns shapes what kinds of knowledge can be produced from this data and the actors who benefit from this knowledge.

What emerges from this analysis is that despite positioning themselves as enablers of open science and open data, these clinical trial data sharing platforms are situated within a political economy of data and innovation commodification, which yields tensions with the historical context underpinning clinical trial regulations. To truly democratize science, this political economy needs to be disrupted – which entails disrupting existing legal frameworks for data and knowledge transfers; rethinking collective health data governance; and democratizing the existing institutional framework for life sciences research.