ESHS/HSS Annual Meeting

Rarity in Medicine 1: New Narratives

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

• Steve Sturdy, University of Edinburgh

Individual Presentations

• The Frequent Rare: Cases and Generalization in Early Modern Medicine - Silvia De Renzi, The Open University

• Monstrous, Singular, Rare: The Representation of Pathologies in Miscellanea Curiosa (1670-1750) - Maria Conforti, Università di Roma

• Rare Appearances of Disease in British Morbid Anatomy, 1793–1827 - Richard Bellis, University of St Andrews

• How Rarity Begins: The Sociable Construction of Novelty in Modern Medicine - Andrew Mendelsohn, Queen Mary University of London

Session Organizers

• Jenny Bangham, University of Edinburgh

• Silvia De Renzi, The Open University

• Andrew Mendelsohn, Queen Mary University of London