Privacy protectionism and health information: is there any redress for harms to health?

Judy Allen, C. D arcy J Holman, Eric M. Meslin, Fiona Stanley

Research output: Chapter in Book/Report/Conference proceedingChapter

9 Scopus citations

Abstract

Health information collected by governments can be a valuable resource for researchers seeking to improve diagnostics, treatments and public health outcomes. Responsible use requires close attention to privacy concerns and to the ethical acceptability of using personal health information without explicit consent. Less well appreciated are the legal and ethical issues that are implicated when privacy protection is extended to the point where the potential benefits to the public from research are lost. Balancing these issues is a delicate matter for data custodians. This article examines the legal, ethical and structural context in which data custodians make decisions about the release of data for research. It considers the impact of those decisions on individuals. While there is strong protection against risks to privacy and multiple avenues of redress, there is no redress where harms result from a failure to release data for research.

Original languageEnglish
Title of host publicationJournal of law and medicine
Pages473-485
Number of pages13
Volume21
Edition2
StatePublished - 2013

ASJC Scopus subject areas

  • Health Policy
  • Issues, ethics and legal aspects
  • Law

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    Allen, J., Holman, C. D. A. J., Meslin, E. M., & Stanley, F. (2013). Privacy protectionism and health information: is there any redress for harms to health? In Journal of law and medicine (2 ed., Vol. 21, pp. 473-485)