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Biocitizenship: The Politics of Bodies, Governance, and Power

Kelly E. Happe, Jenell Johnson, and Marina Levina (eds)

Published in print:
2018
Published Online:
January 2019
ISBN:
9781479845194
eISBN:
9781479846306
Item type:
book
Publisher:
NYU Press
DOI:
10.18574/nyu/9781479845194.001.0001
Subject:
Sociology, Health, Illness, and Medicine

This collection expands scholarly understandings of citizenship in an age in which the material body and its health, vitality, and natural and social environments not only create and discipline the ... More


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

Shelley Z. Reuter

Published in print:
2016
Published Online:
May 2017
ISBN:
9780816699957
eISBN:
9781452955384
Item type:
book
Publisher:
University of Minnesota Press
DOI:
10.5749/minnesota/9780816699957.001.0001
Subject:
Sociology, Health, Illness, and Medicine

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 ... More


Freedom, Exclusion, and Genetic Decision Making

Shelley Z. Reuter

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

Published in print:
2016
Published Online:
May 2017
ISBN:
9780816699957
eISBN:
9781452955384
Item type:
chapter
Publisher:
University of Minnesota Press
DOI:
10.5749/minnesota/9780816699957.003.0007
Subject:
Sociology, Health, Illness, and Medicine

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 ... More


Introduction

Jenell Johnson, Kelly E. Happe, and Marina Levina

in Biocitizenship: The Politics of Bodies, Governance, and Power

Published in print:
2018
Published Online:
January 2019
ISBN:
9781479845194
eISBN:
9781479846306
Item type:
chapter
Publisher:
NYU Press
DOI:
10.18574/nyu/9781479845194.003.0001
Subject:
Sociology, Health, Illness, and Medicine

This chapter provides an overview of the current literature on biocitizenship. It begins by synthesizing the three dominant models of biocitizenship in earlier work: as collective redress for bodily ... More


Patient Activists: Experience with Public Engagement

Heather Aspell, Julie Cerrone, and Kirsten Schultz

in Biocitizenship: The Politics of Bodies, Governance, and Power

Published in print:
2018
Published Online:
January 2019
ISBN:
9781479845194
eISBN:
9781479846306
Item type:
chapter
Publisher:
NYU Press
DOI:
10.18574/nyu/9781479845194.003.0011
Subject:
Sociology, Health, Illness, and Medicine

This chapter includes reflective essays by patient activists regarding their own work that serve as responses to key concepts in the biocitizenship literature


The Right to Be Responsible: Agency and Contemporary Carrier Screening

Shelley Z. Reuter

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

Published in print:
2016
Published Online:
May 2017
ISBN:
9780816699957
eISBN:
9781452955384
Item type:
chapter
Publisher:
University of Minnesota Press
DOI:
10.5749/minnesota/9780816699957.003.0006
Subject:
Sociology, Health, Illness, and Medicine

The fifth chapter provides an overview of the developments leading up to community-based carrier screening for Tay-Sachs, which began in 1971, and explores the problem of agency in a context of ... More


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