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In Genes We Trust: Genetic Privacy in the Age of Precision Medicine

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Personhood in the Age of Biolegality

Part of the book series: Biolegalities ((BIOGA))

Abstract

Rapid development in the area of precision medicine in recent decades has prompted a number of questions and concerns, despite its high promises. The field is charting new territory, not just for medicine but for law and ethics as well. The legal frameworks surrounding the use and abuse of genetic data and genetic privacy are troublingly thin, and an onslaught of personal genetic data seems just around the corner. A move toward collecting troves of previously unknowable personal data has also prompted questions around ethical ideas of legal and digital personhood. A deeper analysis into questions of law, ethics, and science needs to be done in order to identify and advocate for change in the legal sphere, and therefore preempt some of the main concerns surrounding precision medicine. A starting point for this analysis is a comparative review of the current legal frameworks dealing with genetic privacy across a number of Western jurisdictions. This then motivates a number of central questions around the ‘right to know’ certain genetic information and the levels to which this information should be disclosed to third parties.

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Authors and Affiliations

  1. University of New South Wales, Sydney, NSW, Australia

    Dean Southwood

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  1. Dean Southwood
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Correspondence to Dean Southwood .

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Editors and Affiliations

  1. Law, University of New South Wales Sydney, Sydney, NSW, Australia

    Marc de Leeuw

  2. Sociology and Social Policy, University of Sydney, Sydney, NSW, Australia

    Sonja van Wichelen

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Southwood, D. (2020). In Genes We Trust: Genetic Privacy in the Age of Precision Medicine. In: de Leeuw, M., van Wichelen, S. (eds) Personhood in the Age of Biolegality. Biolegalities. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-27848-9_10

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  • DOI: https://doi.org/10.1007/978-3-030-27848-9_10

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  • Publisher Name: Palgrave Macmillan, Cham

  • Print ISBN: 978-3-030-27847-2

  • Online ISBN: 978-3-030-27848-9

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