People, Patients, and Personal Organoids: Three Societies in Biomedical Research

• In Event: Innovation, Biocapital and the Making of Post-Genomic Medicine - II

Abstract

With increasingly urgent calls to increase the broader impacts of research, it becomes pertinent to ask how this affects knowledge production practices in fields where valuing excellence, as measured by way of performance metrics, remains prevalent. How does societal relevance take shape here? On the basis of extended fieldwork in a Dutch academic medical center, I identify three modes of enacting ‘society’ in biomedical research groups. In the first, which I call the ‘discursive society’, a global society of potential patients is enacted through abstract narratives and numbers. Relevant global patient communities are constructed within research documents and descriptions by connecting diseases and genetic variants to risk-factors and statistics. In the second, the ‘patient society’, society is made present through individual representatives of established local patient groups. Patient advocates, clinicians, and research nurses articulate the concerns and questions of patients throughout translational and clinical research projects. In the third, which I call the ‘organoid society’, innovative techniques are used to grow mini-organs - or organoids –from the cells of patients, which act as materially and ethically sensitive interfaces between lab and society. Their promissory potential to address patient concerns, achieve academic excellence through technological innovation, and answer new forms of relevance-based research assessment is successfully combined in futuristic imaginaries of personalized medicine. In the paper I demonstrate how these three modes of enacting society present themselves at different times and places within research projects. Along the way, highly diverse epistemic, strategic and ethical possibilities open up and close down.

Author

• Jochem Zuijderwijk, Center for Science and Technology Studies, Leiden University, the Netherlands