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The politics of 'wrongful life' itself: discursive (mal)practices and Tay-Sachs disease

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This article examines eight wrongful life/wrongful birth suits filed by parents of children born with Tay-Sachs disease. Their legal claims are analysed in terms of the biopolitics of genetic risk that has emerged in recent decades with a view to arguing that, as health and disease are increasingly understood within a genetics framework, the individual is becoming responsibilized to be proactive and undergo genetic testing. At the same time, this responsibilization is being defined as a kind of entitlement rooted in historically specific ideas about personhood and quality of life. The only option for reconciling this contradiction has been simply to define responsibilization as the individual's right, thereby calling into question the notion of agency in genetic decision-making and revealing that choice in this context is in fact becoming the unfreedom to choose.
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Keywords: agency; genetic testing; malpractice; quality of life; responsibilization; risk

Document Type: Research Article

Publication date: 01 May 2007

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