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In defence of a broad approach to public interest in health data research
  1. Angela Ballantyne,
  2. G Owen Schaefer
  1. Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
  1. Correspondence to Dr G Owen Schaefer, Centre for Biomedical Ethics, National University of Singapore, Yong Loo Lin School of Medicine, Singapore 119077, Singapore; owen_schaefer{at}nus.edu.sg

Abstract

In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees (IRBs/RECs), we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current frameworks such as that found in the guidelines approved under Australia’s Privacy Act. It remains unclear which elements of our broad account Grewal and Newson would reject, or indeed where the substantive disagreement with our position lies.

  • research ethics
  • ethics committees/consultation
  • policy guidelines
  • legal aspects

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Footnotes

  • Twitter @G_Owen_Schaefer

  • Contributors This paper was conceived by AB and GOS. AB wrote the initial draft. GOS and AB conducted redrafts and edits after discussion and mutual agreement. GOS and AB approved the final version.

  • Funding Ministry of Education – Singapore: Social Science Research Thematic Grant MOE2017-SS.

  • Competing interests None declared.

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

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