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The conclusion of Testing Fate ties together the themes of the book and extends the argument of Chapter 5 by making the point that the “unfreedom” to fulfill one’s genetic responsibilities derives not only from the phenomenon of geneticization, but also from the paradox of ascribing agency to the Other. Biocitizenship is as much about responsibilization and the individual’s right to be unfree as it is about belonging; so long as some individuals’ freedoms are constrained by their cultural exclusion as the Other, or even where the freedom of some is contingent upon that exclusion, unconstrained agency, i.e., truly free choice, genetic decision-making is impossible.

The introduction of Testing Fate situates the book in terms of the growing tendency within medicine to frame disease in “racial” terms, and the consequent need to explore genetic disease concepts historically and critically. It also provides an overview of the history of Tay-Sachs since its first diagnosis in 1881, including the development of community-based carrier screening in the 1970s. An overview of each chapter and the overall argument is also provided.

The first chapter looks at the initial construction of Tay-Sachs as a Jewish disease in the context of anti-immigrationism in the early decades of the 1900s to demonstrate how medical racialism both contributed to the passing of restrictive immigration legislation in the US and helped lay the groundwork for genetic responsibilization later on.

The second chapter focuses on Jewish immigration to the UK during roughly the same period (1880-1914) and the interventions that were made into the immigrants’ behaviours so as to inculcate an ethos of self-care. This early instance of responsibilization set the stage for Jewish parents to seek out genetic counseling (such as it was) for Tay-Sachs in these early days.

The third chapter looks at the medical portraiture, microscopy, and pedigrees contained within doctors’ medical reports of the disease and how they worked to help constitute Tay-Sachs as a bona fide disease concept, while also framing — imagining — the immigrant Jew as the racialized and pathological Other.

The fourth chapter examines the lay discourse of Tay-Sachs, specifically the way in which online video representations of children with the disease have served to constitute the disease and the Other of Tay-Sachs more recently, namely as a tragic disease-disability that can be avoided with a simple genetic test. The ethics of posting such videos is explored during this chapter.

This chapter explores the nature of racism in the Global North, exploring its antecedents in imperialism and colonialism. It surveys the growth of European cultural and political power, and how racism characterized its economic relations with the rest of the world. Europe imagined ‘the other’ in polarized terms, largely because of the power monopoly it possessed. How this racism entered popular culture is also explored, as well as its lingering impact in the context of post-colonialism, migration and diaspora of minorities often coming to the ‘mother country’ in search of better opportunities or having been invited to work in declining industrial sections as part of the post-war reconstruction process. The rise of ethnic nationalism reflects on the prominence of cultural and structural binary racism that has seen a gradual shift away from a strictly black-white dualism. The reductionism and essentialism of the racism are shifting more and more towards a Muslim-non-Muslim dualism.