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

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Synopsis
In today&’s world, responsible biocitizenship has become a new way of belonging in society. Individuals are expected to make &“responsible&” medical choices, including the decision to be screened for genetic disease. Paradoxically, we have even come to see ourselves as having the right to be responsible vis-à-vis the proactive mitigation of genetic risk. At the same time, the concept of genetic disease has become a new and powerful way of defining the boundaries between human groups. Tay-Sachs, an autosomal recessive disorder, is a case in point—with origins in the period of Eastern European Jewish immigration to the United States and United Kingdom that spanned the late nineteenth and early twentieth centuries, it has a long and fraught history as a marker of Jewish racial difference. In Testing Fate, Shelley Z. Reuter asks: Can the biocitizen, especially one historically defined as a racialized and pathologized Other, be said to be exercising authentic, free choice in deciding whether to undertake genetic screening? Drawing on a range of historical and contemporary examples—doctors&’ medical reports of Tay-Sachs since the first case was documented in 1881, the medical field&’s construction of Tay-Sachs as a disease of Jewish immigrants, YouTube videos of children with Tay-Sachs that frame the disease as tragic disability avoidable through a simple genetic test, and medical malpractice suits since the test for the disease became available—Reuter shows that true agency in genetic decision-making can be exercised only from a place of cultural inclusion. Choice in this context is in fact a kind of unfreedom—a moral duty to act that is not really agency at all.
Copyright:
2016

Book Details

Book Quality:
Publisher Quality
ISBN-13:
9781452951898
Related ISBNs:
9780816699964
Publisher:
University of Minnesota Press
Date of Addition:
Copyrighted By:
University of Minnesota Press
Adult content:
No
Language:
English
Has Image Descriptions:
No
Categories:
History, Nonfiction, Social Studies, Medicine
Submitted By:
Bookshare Staff
Usage Restrictions:
This is a copyrighted book.

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