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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
39
This submission reflects the views of
Organisation Name: 
University of Canberra
Personal Details
General comments
Comments: 

1. Impact on National Statement

The broadening of the Guidelines beyond health will mean consequential changes to the National Statement on Ethical Conduct in Human Research, e.g. third paragraph of the Introduction to Chapter 4.7 reads as follows:

“For health research fitting the above description, researchers must consult Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (NHMRC 2003) (‘Values and Ethics’).

Other documents that might provide useful guidance for researchers are Keeping research on track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics (NHMRC 2005) and the Guidelines for Ethical Research in Indigenous Studies (Australian Institute of Aboriginal and Torres Strait Islander Studies 2002).”

The reference to health will need to be deleted, but more importantly the relationship between the NHMRC and AIATSIS guidelines will need some clarification.  It should be clarified whether it will remain as ‘must’ for NHMRC and ‘might’ for AIATSIS.

2. Relationship with AIATSIS Guidelines

Under the section ‘Scope of the Ethical Guidelines’ some reference needs to be made to the AIATSIS Guidelines. It should be clarified how the 6 values sit with the 14 Principles in the AIATSIS statement and it should be stated which set of values and principles will take precedence. 

3. Research ‘involving’ Aboriginal and Torres Strait Islander people

The Guidelines do not specify what ‘Research involving Aboriginal and Torres Strait Islander people’ means.  The key term here is ‘involving’. There needs to be a distinction between targeted, likely, foreseeable and coincidental involvement. These distinctions are nicely explained in the HREA application form as follows:

Targeted, Likely/Foreseeable and Coincidental Participant Recruitment

Participation of members of defined populations in research occurs as a consequence of recruiting them as a research cohort or as individuals whose participation can be anticipated as being likely or foreseeable. For example, a research project may target people who have a specific disease, disability or impairment or who are migrants from a particular country or it may, because of the setting and nature of the research, be likely to include individuals from these groups.

It is also possible that individuals from a defined population will be recruited into a research project without in any way being targeted by virtue of their being present in the general population from which the participants are being recruited. This is often referred to as ‘coincidental’ recruitment.

This distinction is important, as the purpose of considering the ethical implications of recruiting members of defined populations, whether they are considered to be ‘vulnerable populations’ or not, is to address those implications as they relate to the likely or foreseeable recruitment of these individuals, not as they relate to the coincidental recruitment of these individuals.

Researchers should use common sense and a ‘project-specific’ approach in applying this principle: if it is foreseeable that a portion of the projected participants in a specific research project will be eligible for recruitment as a result of a defined population being specifically targeted or as a result of demographic or other factors, then those ethical considerations that are specific to that group should be addressed. Whereas, if this is not the case, then the fact that it is conceivably possible that individuals who are members of a group will be recruited, but the project is not directed toward that group and the numbers of these individuals will be small, then the ethical considerations that are specific to that group may not need to be addressed.

In Australia, the issue of intended, likely, foreseeable or coincidental recruitment is of particular importance when considering the inclusion of Aboriginal and Torres Strait Islander people in research. The ethics committees that are established to perform review of research that targets or is likely to involve Aboriginal and Torres Strait Islander people have valuable guidance on when and how to apply the guidelines that are appropriate to this research, including definitions that may be useful for researchers.

Also, it should be noted that the Code for the Responsible Conduct of Research only refers to research ‘Significantly affecting Aboriginal and Torres Strait Islander peoples.’

4. Distinguishing between different types and levels of research

There needs to be a distinction made between the different levels and types of research undertakings and how the values and principles are applied differently in practice.  Some levels of research are:

  • Particular identifiable communities with a focus on cultural knowledge, values and practices.
  • Large scale statistical research on the Aboriginal and Torres Strait Islander population as a whole.
  • Evaluation of a health initiative serving several communities.
  • Research where Aboriginal and Torres Strait Islander people are likely to be a significant proportion of the participants but where ancestry is not relevant to the research aims.

It would be useful to develop case studies of these different levels and types of research and how the Guidelines should be applied.

Page reviewed: 2 August, 2018