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

Online ISBN:
9781452955384
Print ISBN:
9780816699957
Publisher:
University of Minnesota Press
Book

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

Shelley Z. Reuter
Shelley Z. Reuter
Concordia University
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Published online:
18 May 2017
Published in print:
1 September 2016
Online ISBN:
9781452955384
Print ISBN:
9780816699957
Publisher:
University of Minnesota Press

Abstract

Testing Fate looks at the racialized history of Tay-Sachs in the US and UK in its construction as a Jewish disease from the late-nineteenth century through to the present era of geneticization, where people are increasingly expected to make the “right” kinds of medical-genetic choices, including the choice to be screened for genetic disease. Taking Tay-Sachs as its exemplar and with a view to exploring what these developments have come to mean for human agency, the book demonstrates that authentic, free choice in genetic-decision-making on one hand, and responsible biocitizenship in a context of exclusion on the other, are a contradiction of terms.

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