I4. Contested/Contesting Heredity Chair: Jennifer Gunn, University of Minnesota - Caroline Wechsler, University of Pennsylvania: Bending to Fit: Genetics, Identity, and the Making of Ehlers-Danlos Syndrome
- Kathryn Irving, University of Melbourne: Garbage in, Garbage out: Idiocy and the History of Statistics
- Leigh Alon, Johns Hopkins University: Defining "The Jew" in the Age of Eugenics: American Jewish Physicians and Biological Jewishness in the early 20th Century
- Emer Lucey, Arizona State University: Autism or Autisms? Genetics, Advocacy, and Autism Discourse
This panel explores the complex role that genetics and heredity have played and continue to play in defining disease. Genetics and ideas of heredity in medicine have long been a source of both promise and peril, with clear ties to eugenics movements, but also the potential to develop life-saving treatments, such as the FDA’s recent approval of the first gene therapies for patients with sickle cell disease. Over the course of the twentieth century, hereditary and genetic discourses have changed how physicians, patients, and researchers have understood and discussed disease and disability, as well as potential interventions. In the cases explored in this panel, disease definitions, management, and research change and shift as heredity or genetics comes into the equation.
Drawing from both historical and contemporary perspectives, from archival documents to oral histories, panelists explore how heredity and genetics have shaped discourses around disease in a range of conditions, from the early 20th century to the present. Emer Lucey and Michael Yudell conduct and analyze oral histories with genetics researchers and autism advocates to explore how autism genetics research shapes discourses about autism both inside and outside the lab, drawing attention to the tensions between the potential for further knowledge and the risks of pursuing “cures” which might eliminate autistic populations. Leigh Alon studies the work of American Jewish physicians in the early 20th century, elucidating how eugenics and discourses around hereditary disease could be mobilized and molded towards different pressing questions of identity. Caroline Wechsler traces how a connective tissue disorder, Ehlers-Danlos Syndrome, was fashioned as “genetic” as part of early field-building efforts in US medical genetics, but has subsequently become less and less tied to medical genetics, calling into question how definitions of “genetic” disease have changed over time.
In each study, panelists explore what happens when inheritance intersects with other ways of knowing disease and disability, asking about the consequences for patients, researchers, and healthcare providers. What makes a condition “genetic” or “heritable”? What can studying such genetics do or mean for patients and providers? And what might be the consequences of such genetic discourses?
