University of Minnesota Press Testing Fate: Tay-Sachs Disease and the Right to Be Responsible

In today’s world, responsible biocitizenship has become a new way of belonging in society. Individuals are expected to make “responsible” medical choices, including the decision to be screened for genetic disease. Paradoxically, we have even come to see ourselves as having the right to be responsible vis-à-vis the proactive mitigation of genetic risk. At the same time, the concept of genetic disease has become a new and powerful way of defining the boundaries between human groups. Tay-Sachs, an autosomal recessive disorder, is a case in point—with origins in the period of Eastern European Jewish immigration to the United States and United Kingdom that spanned the late nineteenth and early twentieth centuries, it has a long and fraught history as a marker of Jewish racial difference. In Testing Fate, Shelley Z. Reuter asks: Can the biocitizen, especially one historically defined as a racialized and pathologized Other, be said to be exercising authentic, free choice in deciding whether to undertake genetic screening? Drawing on a range of historical and contemporary examples—doctors’ medical reports of Tay-Sachs since the first case was documented in 1881, the medical field’s construction of Tay-Sachs as a disease of Jewish immigrants, YouTube videos of children with Tay-Sachs that frame the disease as tragic disability avoidable through a simple genetic test, and medical malpractice suits since the test for the disease became available—Reuter shows that true agency in genetic decision-making can be exercised only from a place of cultural inclusion. Choice in this context is in fact a kind of unfreedom—a moral duty to act that is not really agency at all.