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Testing FateTay-Sachs Disease and the Right to Be Responsible$
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Shelley Z. Reuter

Print publication date: 2016

Print ISBN-13: 9780816699957

Published to Minnesota Scholarship Online: May 2017

DOI: 10.5749/minnesota/9780816699957.001.0001

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Freedom, Exclusion, and Genetic Decision Making

Freedom, Exclusion, and Genetic Decision Making

(p.173) Conclusion Freedom, Exclusion, and Genetic Decision Making
Testing Fate

Shelley Z. Reuter

University of Minnesota Press

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.

Keywords:   Tay-Sachs Disease, Biocitizenship, Medical Racialism, Racialization, Specularism, Ethics, Genetics, Genetic Screening, Immigration, Medical Malpractice

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