The Unethics of Looking at Disease–Disability
The Unethics of Looking at Disease–Disability
Online Representations of Tay-Sachs
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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