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Consent and the ethical duty to participate in health data research

Abstract

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.

  • informed consent
  • research ethics
  • distributive justice

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Footnotes

  • Contributors Both authors contributed to defining the topic of the paper, undertaking research and literature reviews, developing arguments, drafting and revising the text.

  • Funding Royal Society of New Zealand (Marsden Fund) UOO1515.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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