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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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PRINTED FROM MINNESOTA SCHOLARSHIP ONLINE (www.minnesota.universitypressscholarship.com). (c) Copyright University of Minnesota Press, 2022. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in MNSO for personal use.date: 07 July 2022

The Unethics of Looking at Disease–Disability

The Unethics of Looking at Disease–Disability

Online Representations of Tay-Sachs

Chapter:
(p.117) Chapter Four The Unethics of Looking at Disease–Disability
Source:
Testing Fate
Author(s):

Shelley Z. Reuter

Publisher:
University of Minnesota Press
DOI:10.5749/minnesota/9780816699957.003.0005

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.

Keywords:   Tay-Sachs Disease, Children, Representation, Narrative, Medical Racialism, Racialization, Ethics, Genetic Screening, Immigration, Medical Malpractice

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