Abstract
Arrested cerebral development and amaurotic family idiocy—these are two early definitions of what is now known as of Tay-Sachs disease, an autosomal recessive genetic disorder that was first documented in the late 1900s. Beyond these scientific facts, the unfolding of Tay-Sachs is much more complicated when analyzed within a history of anti-immigration sentiment, eugenic concerns, and the development of a disease concept that was used as a significant marker of difference and a racialized condition of the Jewish people. These are just some of the historical, political, and social milieus that Shelley Reuter investigates in her thought-provoking book, Testing Fate: Tay-Sachs Disease and the Right to Be Responsible.
In the age of biomedicine and the ability ofindividuals to make life or death decisions based on medical-genetic information, Reuter challenges us to rethink how such decisions are not an act of agency and individual free will but rather choices that are constrained or undermined by the historical exclusion and othering of people associated with Tay-Sachs, namely Jewish immigrants. Reuter supports her argument by questioning the concept of “responsible biocitizenship” and the presumed agential capacity that is derived from informed citizens to practice self-care in the age of genomic medicine. Testing Fate challenges the responsibilizing notion of agency and free choice that presumably operates under biocitizenship to reveal the paradox of an “individual’s right to be unfree” (p.174), a constrained form of agency shaped by historical and social accounts of excluding Jewish immigrants through the racialization of Tay-Sachs disease, as well as other forms of exclusion and othering.
To articulate this paradox, Reuter conducts a “genealogy of agency and biocitizenship” (p.9), which offers comparative accounts situated in various discursive, spatial, and temporal domains and visual representations. Part I of the book offers an early history of Tay-Sachs in the context of medical racialism and Jewish immigration in the United States and compares this to the cultivation of assimilation and self-care among Jewish immigrants in the UK during the late nineteenth and early twentieth centuries. In Chapter One, Reuter examines medical reports to show how the representation of Tay-Sachs as a Jewish disease not only reified a biological concept of race but also intersected with anti-immigration discourses directed toward eastern European Jews at the time.
In Britain (Chapter 2), Reuter investigates how immigrant Jews engaged with biocitizenship projects in the name of public health and hygiene, including genetic self-care practices for Tay-Sachs, which were cultivated by the Anglo-Jews known as the Jewish Board of Guardians. Importantly, Reuter argues that this history created an opening for Jewish genetic responsibilization, especially for the Tay-Sachs carrier screening that started in the 1970s.
Part II of the book shifts to the way Tay-Sachs has been portrayed through various visual representations in the past and present. In Chapter Three, Reuter examines early images found in the medical literature, such as family trees and dehumanizing pictures of Tay-Sachs patients. These discursive and material artifacts shaped how doctors conceptualized Tay-Sachs through a biocultural process, which created a framework for a pathological Jewish immigrant other of questionable belonging.
The visual representation of Tay-Sachs in online YouTube videos is the focus of Chapter Four. This contemporary example demonstrates how Tay-Sachs has been “imag(in)ed” over time from “an other as racialized diseased into an other of tragically disease-disabled” (p.18). By analyzing the different visual representations of children with Tay-Sachs, Reuter documents a shift from racial projects of Tay-Sachs sufferers and their families evident in pictures taken by physicians to more humanizing portrayals of children on YouTube videos as disease-disabled, children whose national citizenship is somewhat irrelevant. In both cases, however, we see how these different visual representations define who belongs, shape social meanings of Tay-Sachs, and interpose identities of being pathological or able-bodied.
Part III of the book takes a shift to describing the history of Tay-Sachs screening and legal malpractice cases brought by parents of children with Tay-Sachs to highlight emergent geneticized and paradoxical forms of biocitizenship.Chapter Five offers a brief history of Tay-Sachs screening, which was influenced by the work of parent advocates as well as Jewish community leaders and organizations. Although Reuter provides several reasons for the overall success of mass screening for Tay-Sachs in Jewish communities, I was surprised the author did not discuss this success within the context of the Holocaust and the desire for Jewish populations to thrive as citizens and grow as a population that was historically erased. This part of Jewish history is omitted entirely from the book.
The second half of Chapter Five makes a swift transition to the litigation of wrongful birth and wrongful life cases filed by parents who had a child with Tay-Sachs disease. The excitable jump into the litigation cases caught me off guard and left me asking many questions about how this section tied to the rest of the book. For example, I was curious about whether people who do not have Jewish ancestry are regularly screened for Tay-Sachs and how the history of racial and pathological othering, as vividly outlined in the beginning of the book, specifically constrained individual choices in addition to “the moral obligation to others to be responsible” (p.150).
In asking these questions, I was left wondering if the geneticization of Tay-Sachs disease in some ways flattens its racialized history. Or, to put it differently, how has the legacy of the racialization of Tay-Sachs endured in the advent of geneticization and technologies of the self? Further, how does the law engage with different forms of biocitizenship when tied to diseases that shift from racialized projects to genetically informed states of responsibilization? Finally, the detailed discussion of the wrongful life and wrongful birth cases in the context of the right to be responsible appears to be in tension with the history of eugenics in relation to Jewish people. This seems to be a missing part of the analysis and, given the early history of this disease with racialization and eugenics, its inclusion would have been warranted.
Despite these lingering questions, the contributions of the book are many and will appeal to a range of scholars who are interested in the biopolitics of race, disease classification, and genetic risk. The detailed and various representations, range of discourses, and historical shifts of Tay-Sachs offered by Reuter skillfully underscore how diseases are socially, politically, and historically situated in time and place and in particular bodies. The racialization projects of Tay-Sachs and connections with anti-immigration sentiment show how racial categories are embedded in our understanding of disease.
Reuter also provides a theoretically richaccount drawing heavily on Michel Foucault’s ideas of biopower and technologies of the self. Most importantly, the book provides us with distinctive contours of biocitizenship and responsibilization, which were shaped at the turn of the twentieth century and continue to manifest in the age of genomic technologies. However, as Reuter contends, these alleged forms of agency are paradoxically constrained and “unfree” within the context of a history of Tay-Sachs disease that is fraught with various forms of exclusion and othering. In the age of genetic testing before and after birth, this book challenges us to rethink such agency and untethered individual choice.