In genes we trust: genetic privacy in the age of precision medicine

Dean Southwood*

*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingConference proceeding contributionpeer-review

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.
Original languageEnglish
Title of host publicationPersonhood in the Age of Biolegality
Subtitle of host publicationbrave new law
EditorsMarc de Leeuw, Sonja van Wichelen
Place of PublicationSwitzerland
PublisherPalgrave Macmillan
Chapter10
Pages167-183
Number of pages17
ISBN (Electronic)9783030278489
ISBN (Print)9783030278472
DOIs
Publication statusPublished - 2020
Externally publishedYes
EventInternational Workshop on Brave New Law - Legal Personhood in the New Biosciences - Sydney, Australia
Duration: 27 Aug 2018 → …

Publication series

NameBiolegalities
PublisherPalgrave Macmillan

Conference

ConferenceInternational Workshop on Brave New Law - Legal Personhood in the New Biosciences
Country/TerritoryAustralia
CitySydney
Period27/08/18 → …

Keywords

  • Access
  • Risk

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