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

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Author(s): Antoinette Rouvroy (European University Institute, Italy)
Copyright: 2009
Pages: 20
Source title: Handbook of Research on Technoethics
Source Author(s)/Editor(s): Rocci Luppicini (University of Ottawa, Canada)and Rebecca Adell (University of Ottawa, Canada)
DOI: 10.4018/978-1-60566-022-6.ch030

Keywords: Information Ethics / Information Science Reference / IT Security and Ethics / Security & Forensics

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

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