rossmann@em.uni-frankfurt.de

Short Vita
Timo Roßmann is a research associate, coordinator of the CollabAnthro Program, and PhD candidate at the Department of Social and Cultural Anthropology at Goethe University Frankfurt. Previously, he was an appointed lecturer at the Institute for Cultural Anthropology and European Ethnology and worked as a student research/teaching assistant at the Institute of Sociology. He has a background in Sociology (B.A.), Science and Technology Studies (M.A.), and Gender Studies (B.A. and M.A. certificate program). His research focuses on practices of knowledge production under conditions of uncertainty as well as regulatory procedures and standardization processes with view to health and ecosystems. He is interested in developing praxeological and ethnographic approaches while exploring new possibilities of ‘devicing’ such research.

Project description
Key stakeholders in research, diagnostics, and treatment of rare diseases have long emphasized the need to build cooperative networks to create future knowledge on rare diseases – knowledge seen as vital to ultimately provide better health care for people with such conditions. Recently, the implementation of rare disease policies has led to a surge in large-scale national and transnational projects, which seek to institutionalize collaboration in this domain. Anticipating future landscapes of biomedical knowledge production, such projects are caught between the logic of repair and stabilization. While professional collaboration is envisioned to help practitioners pool scarce resources and develop innovative strategies for producing new evidence-based disease knowledge repertoires, collaboration is seen as essential for streamlining information, standardizing, and adapting (data) practices in the field. Here, collaboration emerges as a tactic to develop evidence in areas with limited resources while relying on the same biomedical knowledge production frameworks which otherwise demand an abundance of such ‘knowledge resources’ to build evidence in the first place. As this includes information, established methodologies, biological samples, experts, or available patients, it raises several questions: How does collaboration work in practice under these auspices? How do stakeholders cooperate in researching, diagnosing, and treating rare diseases? And how do these practices afford repairing or stabilizing the conditions of biomedical knowledge production as such? This research project addresses these questions based on three ethnographic case studies conducted at German academic research and medical centers. Moreover, it elaborates how collaboration in rare disease research, diagnostics, and treatment is practiced and infrastructured. Ultimately, this research investigates how various rationales – frequency-based, case-based, or otherwise – undergird the epistemic strategies and knowledge apparatus used to manage limited resources and navigate uncertainties in the field.