Testing Fate: Tay-Sachs Disease and the Right to Be Responsible by Shelley Z. Reuter (review)

Shelley Reuter’s Testing Fate presents an engaging and sophisticated analysis of how the entangled concepts of disease, (bio)citizenship, belonging, and responsibility have complicated the notion of autonomy in medical-genetic decision-making. Tracing the history of Tay-Sachs disease in the United States and Great Britain, Reuter explores the forces that shaped the concept of Tay-Sachs, circumscribed first by race and later by disability. Reuter argues that the racialization of Tay-Sachs as a “Jewish disease” in the early-twentieth century helped lay the groundwork for what she refers to as the “responsibilization” of genetic screening starting in the 1970s. She concludes that responsibilization, especially for people “othered” via race or disability, generates a context in which structural influences constrain real agency. In Testing Fate, Reuter deftly brings the history of Tay-Sachs together with scholarship on race, immigration, citizenship, and disability to make a compelling case for how social forces shape medical understandings.

Testing Fate is organized into three parts, which focus on key moments in the history of Tay-Sachs, to highlight the ways the disease is not only “quite real” in its impact on individuals and their families, but also “discursive” and historically contingent. Parts one and two trace the early genealogy of Tay-Sachs disease. When Waren Tay and Bernard Sachs first identified “amaurotic family idiocy” in the 1880s, they argued that it was a disease experienced, in its “genuine” form, exclusively by Jewish children. Reuter outlines a sort of feedback loop between this medical racialism and a larger “racial project” that “sought to address a range of perceived problems with Jewish immigrants, not least their racial propensity to spread disease” (53). Reuter’s uses medical case reports along with records of the Jewish Board of Guardians in Great Britain to demonstrate how the framework of responsibilization developed out of an atmosphere that viewed Jewish immigrants as a potential threat to public health and to public resources. She traces the early racial framing of the disease to later genetic responsibilization seen in the massive screening programs within the Jewish community starting in the 1970s.

Reuter extends her exploration of disease racialization and belonging with a creative and insightful comparison of visual representations of Tay-Sachs, first in medical texts from the early-twentieth century and later in amateur and professional YouTube videos produced nearly a century later. While on the surface the medical illustrations and family tree diagrams bear little resemblance to YouTube videos, Reuter identifies how they similarly set their subjects apart from the norm in ways that had significant political and regulatory implications. She asserts that “these images immortalize relations of power, exclusion, and othering that both shaped and were shaped by a biocultural discourse of disease,” which contributed to the marginalization of their predominantly Jewish subjects (116). Reuter demonstrates how the process of othering extended to YouTube videos, in which the pathology of race shifted to a pathology of disability and an “unethics” of looking. Reuter reiterates that her analysis “is not to suggest that the disease is not real or that the children featured do not actually suffer,” but to point to the cultural work of categorizing people with Tay-Sachs as a pathologized other and urging viewers to take action to prevent the disease (133).

Reuter’s analysis comes together in the third and final section of Testing Fate, in which she skillfully ties together the themes of disease, belonging, biocitizenship, and responsibility through an examination of wrongful birth and wrongful life malpractice claims. Beginning in the 1970s, United States courts began to see distinctive malpractice lawsuits brought against doctors or clinics for negligently failing to inform or test “at risk” individuals for Tay-Sachs. Reuter compellingly argues that these cases, combined with the impetus toward genetic screening, represent a shift that blurs the line between the right...