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

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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.
Original languageEnglish
Title of host publicationHandbook of Research in Technoethics
EditorsInformation Science
Place of PublicationHershley & New York
PublisherInformation Science Reference (an imprint of IGI global)
Pages454-473
Number of pages20
ISBN (Print)978-1-60566-000-4
Publication statusPublished - 2008

Publication series

NameInformation Science Reference
NumberII

Keywords

  • intra-familial disclosure and management of genetic information; Consent issues in the context of biobanks; Critical assessment of the liberal conception of the individual.
  • Genetic tests; Right to know and not to know; Confidentiality

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  • Cite this

    Rouvroy, A. (2008). Which Rights for Which Subjects? Genetic Confidentiality and Privacy in the Post-Genomic Era. In I. Science (Ed.), Handbook of Research in Technoethics (pp. 454-473). (Information Science Reference; No. II). Information Science Reference (an imprint of IGI global). http://www.crid.be/pdf/public/5861.pdf