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Section 3 (Chapters 3.1 & 3.5), Glossary and Revisions to Section 5 National Statement on Ethical Conduct in Human Research, 2007 submission

This submission reflects the views of
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Defence Science and Technology Group
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Specific Comments
2. Chapter 3.1

The comments related to Sections 3.1.45-3.1.48, internet derived data

  • This guidance is very brief, and also appears very rules-based instead of principles-based. It does not appear to recognise that there are a myriad of different types of internet-derived data, with different risks, contexts and expectations of privacy, e.g. a private and anonymous forum devoted to a sensitive topic vs a public figure who uses the internet to post their views in conjunction with other forms of expression such as public speeches, TV, and print media.
  • The guidance appears open to interpretation, which means that there is a risk that different HRECs and panels will apply them differently.
  • The term “internet-derived data” is very broad and not defined. The University of Melbourne has produced a paper referring to “digital data”, which may be a better term
  • The guidance applies different, and more stringent, ethical regulation than what is applied to real world observations or observations derived from other media sources, such as TV, radio, or print media. For instance, if a prominent figure gives a public address, which researchers wish to analyse, why should the privacy and ethical regulations be more stringent if this address is streamed over the internet vs being printed in a prominent newspaper?
  • The guidance also lacks information on how researchers using internet-derived data should consider ethical obligations beyond privacy, e.g. notifying participants of the outcomes of their research, providing assistance to participants who are adversely affected by the research, etc, noting that many of the guidelines for researchers conducting face to face research do not translate well to the internet (e.g. may be difficult to summon health services for participants who are anonymous, overseas, etc).
  • As a consequence of this, we believe the guidance as-is does not enable ethical research.

Page reviewed: 10 July, 2018