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

Testing Fate: Tay-Sachs Disease and the Right to Be Responsible The use of genetic testing to provide information about health risk and ancestry raises significant questions about choice, expert knowledge, and the reification of the social categories of race and disability. Using the case of Tay-Sachs disease—a rare and debilitating childhood disease believed in the late nineteenth century to exclusively afflict Jews, Shelley Reuter examines the intersection between medical diagnoses and societal notions of racial/ethnic difference. Analyzing texts, images, and videos, Reuter traces the diagnosis and racialization of Tay-Sachs disease alongside a period of anti-immigrant sentiment and discrimination against Ashkenazi Jews in the United States and United Kingdom to Tay-Sachs’s classification as a disabling disease. Since 1880, genetic carrier screening (the screening of potential parents) of Jews in the United States is believed to have reduced Tay-Sachs’s incidence by 80 percent among babies born to Jewish parents. Reuter argues that the adoption of Jewish carrier screening is a form of self-care as a pathway to inclusion, drawing from Nikolas Rose’s concept of responsibilization. This widespread carrier screening frames the key question of the book: can the “responsibilized biocitizen” exercise agency in medical decision-making? The author impressively combines a broad range of data in the analysis, including medical literature, images, and writing about Tay-Sachs disease; court records from wrongful birth and wrongful life cases; and even online YouTube videos of children with Tay-Sachs disease posted by their families. The data analysis buttresses Reuter’s argument that the construction of Tay-Sachs disease is dependent on the construction of a racialized and later disabled other. One intriguing feature of the data that is analyzed in the book is that the historical analysis of disease construction during the late nineteenth and early twentieth centuries was derived largely from medical accounts and the analysis of contemporary disease construction draws largely from parental accounts. As a medical sociologist, this raised questions for me: what is the interaction of these medical and parental accounts in the construction of Tay-Sachs disease and how does this change over time? Testing Fate makes a number of significant contributions to existing studies of genetics, race/ethnicity, and disability. Using Tay-Sachs disease as a case, Reuter examines the intersection of genetics, contamination, and anti-immigrant sentiment, addressing a timely set of questions in the wake of discussions of the global transmission of diseases, such as the Zika virus. Reuter analyzes medical literature to show the deep interrelationship between the definition of Tay-Sachs disease and the framing of Jews as outsiders. She convincingly demonstrates how the racial/ethnic background of the patient became a central feature of the Tay-Sachs diagnosis, often overshadowing other symptoms of Tay-Sachs disease, including the red eye spot. Using the case of Tay-Sachs disease, Reuter illuminates the intersection of racialization and immigration as it relates to disease; her contribution to existing studies of race, disease, and genetics lies in her tackling of citizenship as a key variable (Hatch 2014; Roberts 2011). Still, I would have appreciated further discussion of how Reuter’s case contributes to existing theorizing about racialized conditions, such as sickle cell anemia, and the intersection of race/ethnicity, citizenship, and disease (Benjamin 2011; Wailoo 2001). Another significant contribution is Reuter’s provocative examination of debates about the value of life and the determination of which lives are worth living under the norms of medical responsibilization. Using court cases from families with infants born with Tay-Sachs who sue medical providers for negligence in prenatal care or genetic counseling, Reuter argues that these cases illustrate the prevailing belief that biocitizens have a “fundamental right. . . to subject oneself to medical control” (p. 172). This subjugation to medical control is, as Reuter argues, in tension with the claim that medical knowledge and genetic information provide increased agency. In Testing Fate, Reuter skillfully leverages textual analysis to make a compelling structural claim—that the very medical knowledge that is intended to empower communities and improve health may result in a curtailing of basic rights and further pathologizing of socially stigmatized groups. The book’s compelling analysis of agency would have been strengthened by a more elaborate analysis of social class privilege and power. In Reuter’s comparison of the United States and the United Kingdom, she notes the different societal positions of Jews in both countries and credits the effectiveness of responsibilization in the United Kingdom largely to the effort of elites on the Jewish Board of Guardians. Since she argues that elite Jews were more integrated into British society, it would be helpful to explore the function of social class in shaping the progression of medical responsibilization in these varying national contexts. Testing Fate is an innovative examination of disease, race/ethnicity, and disability that will make a great contribution to an undergraduate course on health and illness or critical studies of the body and disability. It provides compelling and relatable illustrations of the social construction of disease and the intersection between medical categories and social categories of race/ethnicity and disability. I look forward to introducing the book in my undergraduate courses on health and the body. References Benjamin, Ruha. 2011. “Organized Ambivalence: When Stem Cell Research and Sickle Cell Disease Converge.” Ethnicity & Health  15( 4–5): 447– 63. Google Scholar CrossRef Search ADS   Hatch, Anthony. 2014. “Technoscience, Racism, and the Metabolic Syndrome.” In The Routledge Handbook of Science, Technology, and Society , edited by Daniel Lee Kleinman and Kelly Moore. London: Routledge. Roberts, Dorothy. 2011. Fatal Inventions: How Science, Politics, and Big Business Re-Create Race in the Twenty-First Century . New York: New Press. Wailoo, Keith. 2001. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health . Chapel Hill: University of North Carolina Press. © The Author(s) 2017. Published by Oxford University Press on behalf of the University of North Carolina at Chapel Hill. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Social Forces Oxford University Press

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

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Oxford University Press
Copyright
© The Author(s) 2017. Published by Oxford University Press on behalf of the University of North Carolina at Chapel Hill. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
ISSN
0037-7732
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1534-7605
D.O.I.
10.1093/sf/sox084
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Abstract

The use of genetic testing to provide information about health risk and ancestry raises significant questions about choice, expert knowledge, and the reification of the social categories of race and disability. Using the case of Tay-Sachs disease—a rare and debilitating childhood disease believed in the late nineteenth century to exclusively afflict Jews, Shelley Reuter examines the intersection between medical diagnoses and societal notions of racial/ethnic difference. Analyzing texts, images, and videos, Reuter traces the diagnosis and racialization of Tay-Sachs disease alongside a period of anti-immigrant sentiment and discrimination against Ashkenazi Jews in the United States and United Kingdom to Tay-Sachs’s classification as a disabling disease. Since 1880, genetic carrier screening (the screening of potential parents) of Jews in the United States is believed to have reduced Tay-Sachs’s incidence by 80 percent among babies born to Jewish parents. Reuter argues that the adoption of Jewish carrier screening is a form of self-care as a pathway to inclusion, drawing from Nikolas Rose’s concept of responsibilization. This widespread carrier screening frames the key question of the book: can the “responsibilized biocitizen” exercise agency in medical decision-making? The author impressively combines a broad range of data in the analysis, including medical literature, images, and writing about Tay-Sachs disease; court records from wrongful birth and wrongful life cases; and even online YouTube videos of children with Tay-Sachs disease posted by their families. The data analysis buttresses Reuter’s argument that the construction of Tay-Sachs disease is dependent on the construction of a racialized and later disabled other. One intriguing feature of the data that is analyzed in the book is that the historical analysis of disease construction during the late nineteenth and early twentieth centuries was derived largely from medical accounts and the analysis of contemporary disease construction draws largely from parental accounts. As a medical sociologist, this raised questions for me: what is the interaction of these medical and parental accounts in the construction of Tay-Sachs disease and how does this change over time? Testing Fate makes a number of significant contributions to existing studies of genetics, race/ethnicity, and disability. Using Tay-Sachs disease as a case, Reuter examines the intersection of genetics, contamination, and anti-immigrant sentiment, addressing a timely set of questions in the wake of discussions of the global transmission of diseases, such as the Zika virus. Reuter analyzes medical literature to show the deep interrelationship between the definition of Tay-Sachs disease and the framing of Jews as outsiders. She convincingly demonstrates how the racial/ethnic background of the patient became a central feature of the Tay-Sachs diagnosis, often overshadowing other symptoms of Tay-Sachs disease, including the red eye spot. Using the case of Tay-Sachs disease, Reuter illuminates the intersection of racialization and immigration as it relates to disease; her contribution to existing studies of race, disease, and genetics lies in her tackling of citizenship as a key variable (Hatch 2014; Roberts 2011). Still, I would have appreciated further discussion of how Reuter’s case contributes to existing theorizing about racialized conditions, such as sickle cell anemia, and the intersection of race/ethnicity, citizenship, and disease (Benjamin 2011; Wailoo 2001). Another significant contribution is Reuter’s provocative examination of debates about the value of life and the determination of which lives are worth living under the norms of medical responsibilization. Using court cases from families with infants born with Tay-Sachs who sue medical providers for negligence in prenatal care or genetic counseling, Reuter argues that these cases illustrate the prevailing belief that biocitizens have a “fundamental right. . . to subject oneself to medical control” (p. 172). This subjugation to medical control is, as Reuter argues, in tension with the claim that medical knowledge and genetic information provide increased agency. In Testing Fate, Reuter skillfully leverages textual analysis to make a compelling structural claim—that the very medical knowledge that is intended to empower communities and improve health may result in a curtailing of basic rights and further pathologizing of socially stigmatized groups. The book’s compelling analysis of agency would have been strengthened by a more elaborate analysis of social class privilege and power. In Reuter’s comparison of the United States and the United Kingdom, she notes the different societal positions of Jews in both countries and credits the effectiveness of responsibilization in the United Kingdom largely to the effort of elites on the Jewish Board of Guardians. Since she argues that elite Jews were more integrated into British society, it would be helpful to explore the function of social class in shaping the progression of medical responsibilization in these varying national contexts. Testing Fate is an innovative examination of disease, race/ethnicity, and disability that will make a great contribution to an undergraduate course on health and illness or critical studies of the body and disability. It provides compelling and relatable illustrations of the social construction of disease and the intersection between medical categories and social categories of race/ethnicity and disability. I look forward to introducing the book in my undergraduate courses on health and the body. References Benjamin, Ruha. 2011. “Organized Ambivalence: When Stem Cell Research and Sickle Cell Disease Converge.” Ethnicity & Health  15( 4–5): 447– 63. Google Scholar CrossRef Search ADS   Hatch, Anthony. 2014. “Technoscience, Racism, and the Metabolic Syndrome.” In The Routledge Handbook of Science, Technology, and Society , edited by Daniel Lee Kleinman and Kelly Moore. London: Routledge. Roberts, Dorothy. 2011. Fatal Inventions: How Science, Politics, and Big Business Re-Create Race in the Twenty-First Century . New York: New Press. Wailoo, Keith. 2001. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health . Chapel Hill: University of North Carolina Press. © The Author(s) 2017. Published by Oxford University Press on behalf of the University of North Carolina at Chapel Hill. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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Social ForcesOxford University Press

Published: Mar 1, 2018

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