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

Between 1880 and 1920, physicians in the United States and Great Britain identified a small but concerning number of infants with severe mental and developmental retardation among Jewish immigrant families. Tay-Sachs disease (TSD), as this hereditary condition is known today, has no cure, but it can be effectively prevented through carrier screening or therapeutic abortion. Fortunately, beginning in the 1980s, aggressive carrier screening coordinated by Jewish communities and their medical partners dramatically reduced TSD’s incidence in North America, Western Europe, and Israel. In 2003–4, for instance, only ten such babies were born in the United States, none Jewish. As the latter example suggests, TSD is not an exclusively Jewish disease. Yet, TSD carrier screening among Jewish communities is often hailed today as an exemplar of successful grassroots public health advocacy within an ethnic group—a kind of self-empowerment with a presumed genetic basis. Shelley Reuter’s thought-provoking book complicates such genetic disease narratives by showing that TSD has always been tied problematically to race. TSD, she argues, is an instructive case of how much choice, if not “freedom,” the racialized and pathologized “Other” can exercise with regard to one’s genetic fate (p. 2).

Testing Fate is a work of critical-historical sociology delivered in three parts and driven by Reuter’s determined argument about how Jewish people have been made socioculturally “responsible” for the genetic diseases that presumably affect them. The book’s first part explains how TSD was configured as a “racialized disease” in an age of rampant anti-immigrant sentiment in the United States (chap. 1) and Great Britain (chap. 2). In the British case, Reuter details how Jews combated stigmatizing portraits of disease—inclusive of TSD—by cultivating a “will to health” in the public consciousness. Representing the interests of the British Jewish community, the Jewish Board of Guardians (JBG) worked resolutely to create the impression among Britons that Anglo-Jews set standards of health, parenthood, and sobriety that native Britons should emulate (p. 63).

Part 2 of Testing Fate provides finer textual analysis of the Tay-Sachs experience across the decades. It focuses on how TSD has been visually represented first in the printed medical literature (chap. 3) and later in online representations of the malady (chap. 4). The former chapter highlights how visual imagery accompanying medical case reports and studies of TSD throughout the twentieth century “reified” the malady in racialized terms, making medical practitioners complicit in the “Othering” of Jewish people. The latter chapter highlights how the “Othering” of people affected by TSD shifted in the 1990s and 2000s away from explicitly racial terms to highlight the undesirability of this disease-disability. Whereas the older medical literature was tainted by racialism, for Reuter the contemporary “specularism” constituting TSD as a horrific disease/disability also fails the test of inclusiveness.

Part 3 stresses the paradoxical efforts to manage TSD through carrier screening from the 1970s into the 2000s (chap. 5). Here, Reuter focuses squarely on the carrier’s “right to be responsible” relative to the growing and, by most accounts, “effective” sociocultural imperative to prevent TSD lives in the age of medical genetics. The successes were more immediate in the United States, where there was early and aggressive cooperation between medical geneticists and Jewish communities. TSD carrier screening in Great Britain advanced more slowly, in part because British advocates did not initially include JBG or Jewish community leaders. Provocatively, Reuter then turns from the controversies surrounding TSD carrier screening to explore the emergence of wrongful birth and wrongful life suits involving TSD. There were eight such cases in the United States between 1977 and 2003, and Reuter interprets them as instances of “responsible personhood” that expose how autonomy in genetic decision making remains severely limited today. The cultures of TSD, even as they have changed over time, continue to be constituted in exclusive terms, leading Reuter to...