The privacy-related challenges facing medical research in an era of big data analytics

a critical analysis of Australian legal and regulatory frameworks

Research output: Contribution to journalArticleResearchpeer-review

Abstract

This article examines the Australian approach to handling the complex privacy issues raised by Big Data analytics in health research. It analyses the privacy challenges posed by Big Data analytics and considers the privacy-related issues pertaining to the secondary use of health data for research purposes. It also examines the Australian regulatory regimes governing secondary uses of health data for research purposes contained in privacy legislation and human research guidelines, and includes a critique of a new criminal offence for re-identification of de-identified datasets proposed by the Australian Government. The article concludes with suggestions for a reform process that enables responsible research into big health data while properly addressing the protection of privacy and confidentiality of such data.
Original languageEnglish
Pages (from-to)188-203
Number of pages16
JournalJournal of Law and Medicine
Volume26
Issue number1
Publication statusPublished - 2018

Keywords

  • Big Data
  • Big Data analytics
  • health research
  • privacy law
  • Human Research Ethics Committees
  • health records law
  • consent
  • ethics
  • re-identification of records
  • National Statement on Ethical Conduct in Human Research;

Cite this

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title = "The privacy-related challenges facing medical research in an era of big data analytics: a critical analysis of Australian legal and regulatory frameworks",
abstract = "This article examines the Australian approach to handling the complex privacy issues raised by Big Data analytics in health research. It analyses the privacy challenges posed by Big Data analytics and considers the privacy-related issues pertaining to the secondary use of health data for research purposes. It also examines the Australian regulatory regimes governing secondary uses of health data for research purposes contained in privacy legislation and human research guidelines, and includes a critique of a new criminal offence for re-identification of de-identified datasets proposed by the Australian Government. The article concludes with suggestions for a reform process that enables responsible research into big health data while properly addressing the protection of privacy and confidentiality of such data.",
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KW - re-identification of records

KW - National Statement on Ethical Conduct in Human Research;

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