LAUSR

T he use of genetic testing to provide information about health risk and ancestry raises significant questions about choice, expert knowledge, and the reification of the social categories of race and disability. Using the case of Tay-Sachs disease—a rare and debilitating childhood disease believed in the late nineteenth century to exclusively afflict Jews, Shelley Reuter examines the intersection between medical diagnoses and societal notions of racial/ethnic difference. Analyzing texts, images, and videos, Reuter traces the diagnosis and racialization of Tay-Sachs disease alongside a period of anti-immigrant sentiment and discrimination against Ashkenazi Jews in the United States and United Kingdom to Tay-Sachs’s classification as a disabling disease. Since 1880, genetic carrier screening (the screening of potential parents) of Jews in the United States is believed to have reduced Tay-Sachs’s incidence by 80 percent among babies born to Jewish parents. Reuter argues that the adoption of Jewish carrier screening is a form of self-care as a pathway to inclusion, drawing from Nikolas Rose’s concept of responsibilization. This widespread carrier screening frames the key question of the book: can the “responsibilized biocitizen” exercise agency in medical decision-making? The author impressively combines a broad range of data in the analysis, including medical literature, images, and writing about Tay-Sachs disease; court records from wrongful birth and wrongful life cases; and even online YouTube videos of children with Tay-Sachs disease posted by their families. The data analysis buttresses Reuter’s argument that the construction of Tay-Sachs disease is dependent on the construction of a racialized and later disabled other. One intriguing feature of the data that is analyzed in the book is that the historical analysis of disease construction during the late nineteenth and early twentieth centuries was derived largely from medical accounts and the analysis of contemporary disease construction draws largely from parental accounts. As a medical sociologist, this raised questions for me: what is the interaction of these medical and parental accounts in the construction of Tay-Sachs disease and how does this change over time?