ESHS/HSS Annual Meeting

Rarity in Medicine 2: Geographies and Politics

Session Submission Type: Organized Session

English Abstract

Rarity has a special place in today’s healthcare and biomedicine. But what counts as ‘rare’ is not self-evident and is historically contingent. A great deal of technical, bureaucratic, and communicative work goes into defining a case or condition as rare. Moreover, notions of rarity intersect with the power and agency of professionals, patients, and clients, and are linked to the othering of people or communities.
Historically, the relations between the rare and the common have fundamentally shaped medical thinking and practice. European early modern physicians framed unusual cases as monstrous or wondrous but recognised some as extreme manifestations of ordinary pathological processes. Around the globe, rarity sometimes had a puzzling relationship with geography, as a disease that appeared common in one place might be rare in another. Postmortems opened up scope for the ‘rare’ in the 16th-18th centuries, which in turn spurred doctors’ research into pathology in the 19th century, published in a flourishing medical journal literature. In the twentieth century, rare diseases and patients came to be considered exceptionally useful for training professionals and understood as valuable for scientific research, as cases, models, or revealing of ‘normal’ processes. Today, ‘rare diseases’ provide a crucial rationale and basis for large-scale genomics programmes.
This symposium explores these changing relations, taking a comparative perspective on the meanings, purposes, and ramifications of the ‘rare’ and the ‘common’ and on the political, epistemic, and institutional formations on which they depend (and which they in turn can reshape). Considering rarity in the long view across geographic contexts (China, India, US, and Europe) allows us to collaboratively review standard narratives of change in the history of knowledge, science and medicine, and bring into focus wide-ranging social and epistemological configurations in a continuum based on cases in medical practice.

Sub Unit

• Organized Session

Chair

• Karin Tybjerg, University of Copenhagen

Individual Presentations

• Rarities of the Southern Frontier: Tropical Illnesses and the Politics of Novelty in Early Modern China - Brian S.-K. Li, Max Planck Institute for the History of Science

• From Rare to Hiding in Plain Sight: ‘Cretinism,’ Goitre, and ‘Feeblemindedness’ in Interwar America - Sarah Naramore, University of Edinburgh

• Rare Spleens and Black Skin: Rarity in the making of Kala-Azar in Assam, 1890s. - Saikia Anidrita, Delhi University

• Uses and Functions of Rarity in Contemporary UK Biomedicine - Jenny Bangham, University of Edinburgh

Session Organizers

• Jenny Bangham, University of Edinburgh

• Silvia De Renzi, The Open University

• Andrew Mendelsohn, Queen Mary University of London