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Paper short abstract

I explore the rise of ciliary cell biology, focusing on the primary cilium’s transformation from a marginal cell structure to a key cell-signaling agent. I show how narrative framings of biological agents can unite stakeholders, mobilize resources, and help consolidate new scientific fields.

Paper long abstract

My contribution examines the emergence and institutionalization of ciliary cell biology, a burgeoning field within biology. It focuses on the narrative framing of its central biological agent—the primary cilium—and the role it played in advancing the field. Once dismissed as a ‘useless evolutionary remnant,’ this minuscule, hair-like structure protruding from the membranes of most eukaryotic cell types has been recast as a ‘hotspot for signal transmission.’ Cell biologists now recognize its crucial role in cell communication and in the development of treatments for conditions known as ciliopathies.

Through participant observations combined with in-depth ethnographic interviews with key figures—patient advocates, professors, and researchers in the UK and Germany who have followed this field’s evolution over the past 25 years—I demonstrate that the narrative of the primary cilium’s vindication has been a powerful driving force. This story has united patient communities and researchers behind the shared goal of advancing basic research and addressing the needs of ciliopathy patients. For patient communities, it provided a sense of identification with a marginal physiological structure; for researchers, it channeled the potential to highlight previously marginal agents within the framework of discovery.

The case of the primary cilium illustrates how compelling narratives serve to assemble stakeholders, mobilize resources, gain institutional legitimacy, and consolidate new scientific fields. By examining this process, my study sheds light on the relationship between scientific storytelling, patient advocacy work, and institutional support in shaping the trajectories of biomedical inquiry.