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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
38
This submission reflects the views of
Organisation Name: 
University of Technology Sydney
Personal Details
Specific Questions
Question 1: 
It is not clear what the rationale is for broadening the scope beyond health research, given the NHMRC’s remit is to support health and medical research. The scope is consistent in both documents, however our concern is that in broadening the scope beyond health research the NHMRC has reduced focus on particular health-related issues. For example, both the Guidelines and Keeping Research on Track II document are almost silent on health-related issues such as databanks, interventions and therapies, human biospecimens and human genetics as outlined in the National Statement on Ethical Conduct in Human Research (National Statement), which are areas of particular sensitivity to Aboriginal and Torres Strait Islander peoples. Furthermore, the common types of research outlined on page 22 of the Keeping Research on Track II document are quite low risk, and do not provide any specific guidance on potentially high risk health research, such as epidemiological studies and/or clinical trials. As above, this should be better aligned with the specific research methods and fields outlined in the National Statement.
Question 2: 
The issue of intellectual property and rights to retain ownership of Indigenous knowledge is an important one. The revised guidelines provide a positive step towards acknowledging and explaining these rights, to researchers and communities. It is also pleasing to see that the information contained in Keeping Research on Track II regarding intellectual property has been mapped to the relevant principles in the AIATSIS Guidelines for Ethical Research in Australian Indigenous Studies 2012. At UTS, researchers are encouraged to reference the AIATSIS Guidelines when developing research involving Indigenous communities, and are encouraged to use them in conjunction with the ARC or NHMRC Guidelines, where relevant.
Question 3: 
Case studies may provide useful supplementary material, but should not result in an overwhelming amount of information, as the Guidelines themselves are already significantly weighty. It would be preferable to see a small number of case studies addressing a range of issues outlined in the Guidelines, rather than writing specific examples for individual issues (e.g. intellectual property).
General comments
Comments: 
  1. An issue of importance that should be covered in these Guidelines is around reporting back the research findings and outcomes to the participants and their communities. The current Guidelines for researchers make a brief mention on page 18, and there is more detailed consideration given in Keeping Research on Track II (page 29), however it would be useful to give more detailed guidance to researchers, who have the responsibility of doing the right thing regarding feedback. We note that the AIATSIS Guidelines for Ethical Research in Australian Indigenous Studies 2012 encourage feedback at the community level, and based on our experience consider national feedback to be less successful or suitable.
  2. The Keeping Research on Track II guidelines includes an overwhelming list of questions (>40 in section 3 alone) for participants to think about when agreeing to participate in research. This could be burdensome for communities, especially in relation to small research projects. It is important to give people tools for evaluation, but these should be simple and pertinent to the project (e.g. using visual representation, and plain language). The questions could be ranked by importance/relevance. What are the BIG questions? The proposed list is neither comprehensive, nor practical. Furthermore, there is nothing in the guideline to suggest that the onus is on the researchers to address many of these questions when approaching or providing information to Indigenous communities to seek their participation and support. This will also impact a HREC’s ability to assess a research proposal, if the researcher hasn’t addressed the questions raised by the Guidelines, an HREC cannot assume that those issues won’t apply.
  3. The Guidelines have helpfully mapped each section to the NHMRC National Statement requirements. It would be equally useful to map the documents to the AIATSIS Guidelines/principles.
  4. UTS anticipates that the revised information will be disseminated in a range of user-friendly formats, as has been done in the past. We also question whether the material will be reproduced into any of the Aboriginal or Torres Strait Islander languages.

Page reviewed: 2 August, 2018