In today’s world, responsible biocitizenship has become a new way of belonging in society. Individuals are expected to make “responsible” medical choices, including the decision to be screened for genetic disease. Paradoxically, we have even come to see ourselves as having the right to be responsible vis-à-vis the proactive mitigation of genetic risk. At the same time, the concept of genetic disease has become a new and powerful way of defining the boundaries between human groups. Tay-Sachs, an autosomal recessive disorder, is a case in point—with origins in the period of Eastern European Jewish immigration to the United States and United Kingdom that spanned the late nineteenth and early twentieth centuries, it has a long and fraught history as a marker of Jewish racial difference. 

In Testing Fate, Shelley Z. Reuter asks: Can the biocitizen, especially one historically defined as a racialized and pathologized Other, be said to be exercising authentic, free choice in deciding whether to undertake genetic screening? Drawing on a range of historical and contemporary examples—doctors’ medical reports of Tay-Sachs since the first case was documented in 1881, the medical field’s construction of Tay-Sachs as a disease of Jewish immigrants, YouTube videos of children with Tay-Sachs that frame the disease as tragic disability avoidable through a simple genetic test, and medical malpractice suits since the test for the disease became available—Reuter shows that true agency in genetic decision-making can be exercised only from a place of cultural inclusion. Choice in this context is in fact a kind of unfreedom—a moral duty to act that is not really agency at all.  

Shelley Z. Reuter is associate professor of sociology at Concordia University. She is the author of Narrating Social Order: Agoraphobia and the Politics of Classification.

"An engaging and carefully documented piece of scholarship. "—Disability Studies Quarterly

"A thoughtful, rigorous contribution."—Journal of the History of Medicine

"A sound contribution to anthropological debates surrounding the expression of biocitizenship, and, more specifically, how the decisions surrounding genetic screening are constrained by the continuous inculcation of normative ideas of what constitutes a responsible body and biocitizen."—Medical Anthropology Quarterly

"This well-written and fascinating account of the history of a racialised disease should be read by both health care providers and scholars in a wide range of fields interested in the history of race and medicine."—Medical History 

"I suspect this book and the issues raised will nonetheless lend themselves to vibrant discussions in graduate seminars."—American Journal of Sociology

"Reuter offers a necessary critical, comprehensive, and sociological examination of the history of Tay-Sachs and its construction as a disease concept."—New Genetics and Society

"Testing Fate is a readable and inspiring book that has the great advantage of remaining accessible throughout. It would likely appeal to scholar and intelligent layman alike."—Isis

"Testing Fate illustrates how diseases become racialized, how racializing them supports political projects, and how the medical profession has been instrumental in racial formation."—Dorothy Roberts, author of Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century

"Shelley Z. Reuter offers a thoughtful, thorough, and sophisticated analysis of themes of modern biocitizenship and belonging refracted through a historical case study of Tay-Sachs disease."—Jonathan Kahn, Hamline University

"As she tells the fascinating and important story of Tay-Sachs disease, Shelley Reuter skillfully reminds us of the tight links connecting our concepts of disease to visions of belonging and otherness, selfhood and social responsibility."—Steven Epstein, author of Inclusion: The Politics of Difference in Medical Research