Which Rights for Which Subjects?: Genetic Confidentiality and Privacy in the Post-Genomic Era

Which Rights for Which Subjects?: Genetic Confidentiality and Privacy in the Post-Genomic Era

Antoinette Rouvroy (European University Institute, Italy)
Copyright: © 2012 |Pages: 20
DOI: 10.4018/978-1-61350-323-2.ch711
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Abstract

The aim of the present chapter is to elucidate the paradoxical position of the individual legal subject in the context of human genetics. It first discusses the assumed individual “right to know” and “right not to know” about genetic susceptibilities, predispositions and risks when genetic tests exist, and assess the usual assumption according to which more information necessarily increases liberty and enhances autonomy. A second section is dedicated to the issues of confidentiality, intra-familial disclosure and familial management of genetic information. The idea is suggested that those issues challenge the fundamental liberal unit of the individual traditionally understood as a stable, unitary, embodied entity.
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The “Right To Know” And The “Right Not To Know”

A usual argument favouring the “duty to know” over the “right not to know” is that genetic risk information positively reinforce the ‘genetically informed’ and ‘genetically empowered’ individual’s autonomy. The argument appears particularly compelling as a major ethical and legal imperative of neoliberal societies is the respect and, where necessary, enhancement of individual autonomy. Being aware of one’s genetic risks, it is assumed, allows individuals to better adapt their lifestyle and diet, adopting a preventative attitude in order to keep healthy.2 Yet, the relationship between genetic information and individual autonomy is much more complex than usually assumed.

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