Life Alchemy: Classification of Rare Diseases and Uneven Inclusion in China

• In Event: Science, Knowledge & Technology Section Roundtables
  In Refereed Roundtable (60 minute): Table 2: Distinguishing difference: classification, standardization, and racialization

Abstract

How do inclusion-oriented health reforms generate uneven inclusion? I examine this puzzle through China’s rare-disease catalogues—state-led classification regimes that translate clinically heterogeneous conditions into administratively actionable categories. China has issued multiple overlapping lists (Shanghai 2016; advocacy list 2017; national catalogues 2018 and 2023; Shanghai revision 2025). These classificatory moves promise to “leave no one behind,” yet they can also stratify which diseases, experts, and patient communities gain visibility, research capacity, and access to treatment.

I integrate computational network analysis with fieldwork to trace how cataloguing reshapes the rare–common disease boundary and the politics of expertise. On the computational side, I build a disease–publication corpus for the union of catalogue diseases and construct disease–expert bipartite networks from PubMed-indexed articles. Using projections and blockmodeling, I identify structural roles that diseases occupy in expert practice and estimate how listing events shift collaboration topology, brokerage concentration, and rare–common mixing over time. On the qualitative side, I draw on ethnography and interviews with patient advocates, clinicians, and policy/industry intermediaries to show how advocates and experts translate niche conditions into “public issues” by aligning them with criteria that travel across domains.

I argue that catalogues function as boundary infrastructure: they coordinate expert work and patient claims while reallocating attention and authority in patterned, unequal ways. The project advances sociological debates on commensuration, boundary work, and expertise by specifying a networked mechanism through which classificatory governance produces stratified inclusion.

Author

• Yanze Yu, Columbia University