Book Review: Testing Fate: Tay-Sachs Disease and the Right to Be Responsible

Testing Fate: Tay-Sachs Disease and the Right to Be Responsible. Shelly Z. Reuter, Minneapolis: University of Minnesota Press, 2016. 264 pp.

In Testing Fate, Shelley Reuter applies perspectives in critical sociology to the study of Tay-Sachs disease. Tay-Sachs is a rare genetic disorder that is degenerative and results in a fatal outcome (usually) during infancy. Reuter problematizes the ways in which responsibility—as both a conduct of self-care and of “belonging”—has been cultivated over time in the United Kingdom and United States by taking biocitizenship. The book is arranged according to three areas of analysis: (1) pathologizing the other; (2) imag(in)ing difference; and (3) paradoxical biocitizenship. This structure guides the reader through the historical contexts in which debates surrounding Tay-Sachs disease have emerged over time. While there is still no biomedical cure for Tay-Sachs, since the 1970s prevention by way of genetic surveillance has been adopted as a strategy to avoid inheritance of the mutated gene. Reuter takes the development of genetic surveillance as a point of departure to critique the murky entanglement of disease within the issues of ethics, agency, choice, and responsibility.

Testing Fate opens by positioning Tay-Sachs (or “amaurotic family idiocy” as it was formerly called) as a “disease concept,” being both “a product and productive of history and social relationships—relationships of inclusion, exclusion, and power” (p. 4). Part One introduces how cases of Tay-Sachs were observed by physicians at the tail end of the 19th century in the East End of London, which was home, at the time, to a growing émigré Jewish population from central and eastern Europe (Ashkenazim). Tay-Sachs has never been exclusive to people of an Ashkenazi Jewish heritage (and was known to occur in a range of ethnic groups), yet for much of the 20th century, the disease was nonetheless framed as a racial marker of being Jewish.

Reuter’s account challenges representations of Tay-Sachs as a “Jewish disease,” pointing to such representations as a classic example of medical racialism. She places the historical discourse surrounding Tay-Sachs in a broader context in which immigrant Jews were historically constructed as a defective and racialized Other and a threat to the broader population. Reuter advances her argument that Tay-Sachs is a disease concept by articulating how biomedical ideas and political ambitions were mutually reinforcing, with representations of immigrant Jews as pathological and dangerous to the population seized as an opportunity to reinforce anti-immigrant agendas in the early 20th century.

A particular contribution of the book is the analytical juxtaposition of ethical debates surrounding medical images from the early 20th century alongside present-day YouTube videos. This contrast forms the heart of Part Two, where Reuter articulates the enduring power of biomedicine to exclude the body (of the Other) over time by (historically) pathologizing it, and (now) constructing disease disability as avoidable through genetic interventions and surveillance. The tarring of Jewish immigrants as a threat to society is set against the contemporary “genetic responsibilization” of individuals to society, which presents historical continuities and discontinuities that clearly frame Tay-Sachs as a disease concept.

In science and technology studies Tay-Sachs is often discussed in the narrow but important relation to Dor Yeshorim (an anonymized system of carrier screening in Jewish communities), but Testing Fate advances past work in this field. Part Three explores how individuals are expected to realize and act on their civic responsibility to undergo screening in order to prevent unnecessary burdens to state welfare services and society. The theoretical crux of Testing Fate appears in Reuter’s claim that individual choice in the context of genetic screening is constrained by both the “biopolitics of risk” and the “moral obligation to others to be responsible” (p. 150). Testing Fate is therefore well positioned in a broader body of scholarship, as the expectation for individuals (and potential parents) to be what Rayna Rapp (1999) elsewhere has termed “moral pioneers” is part and parcel of productive biocitizenship and belonging in society. As Reuter asks: “Will choosing not to be screened for and subsequently transmitting genetic disease one day be grounds for laying criminal charges against claims of (ir)responsible life?” (p. 170).

Viewing some of the accessible YouTube videos referenced in the book can be challenging, but those videos can help the reader navigate the arguments presented in Testing Fate. For example, the promotional YouTube videos uploaded by the National Tay-Sachs & Allied Diseases Association are helpful in tracing Reuter’s arguments about how parental uptake of genetic screening to “know your risk” and prevent an “anomalous” birth are articulated in the public domain. These promotional videos exemplify how the targeting of populations for genetic surveillance extend beyond Jews to include people of Irish descent—presenting continuities with historical prejudices toward immigant groups in the United States. How medico–political constructions of Tay Sachs and risk are “imag(in)ed” (as Reuter explains in Part Two) or circulated over time through the development of digital media is fascinating.

Testing Fate did have some omissions in the historical discussions. Reuter’s critical analysis of the archival material focuses almost exclusively on the immigrant Jewish narrative in London as if it were a microcosm of the United Kingdom. In so doing, she loses site of nuanced historical differences and developments at a time of multiplicity and migration. Only cursory references are made to important Jewish settlements outside of London, such as Manchester. Reflecting on established studies that explore the entanglement of Jewish immigration, health, and self-care in England (particularly the work of Susan Tananbaum and Bill Williams) could also have enriched the historical debates advanced in the book.

The approach taken in Testing Fate makes 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. The book’s effective analytical study of archival material and digital media makes it a particularly useful induction for undergraduate and postgraduate students exploring the historical and contemporary entanglement of migration, xenophobia, biocitizenship, and now disease disability.


Reference Cited

Rapp, R. 1999. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.

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