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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
15
This submission reflects the views of
Organisation Name: 
University of Tasmania
Personal Details
Specific Questions
Question 1: 
The University commends the NHMRC, Australian Research Council and Universities Australia on broadening the scope of the guidelines beyond health research, and confirm that they now clearly apply to all Aboriginal and Torres Strait Islander research.
Question 2: 
Advice from the University’s experts in this area suggests that more could be done to make clear the conceptual and legal distinctions between Indigenous Cultural and Intellectual Property Rights (ICIPR) and other legal intellectual property rights such as copyright. Specific comments are included in Appendix 1 where the University suggests further consideration may be required. Further detail can be provided on these comments if requested by the NHMRC.
Question 3: 
The University concurs that it would be beneficial to include a case study about intellectual property as supplementary material. We suggest that this could include an example of an intangible asset or intellectual property that has been derived from Indigenous knowledge.
Questions related to sections of the document
DOCUMENT #1 - Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: 
Structure of the Ethical Guidelines: the six core values

Structure of the Ethical Guidelines: the six core values, Page 10

The statement “These values are present through time – past, present and future” could be expanded to address the practical outcomes.

Reciprocity

Reciprocity, Page 8

Further information about how this principle impacts on research could be provided.

The use of the word “our” in this section appears to be inconsistent with the language used in the description of the other core values.

Equity

Equity, Page 13

Equity is a preferable term to the previously used equality.

Respect

Respect, Page 16

It would be useful to include guidance for researchers on determining the appropriate Aboriginal and Torres Strait Islander communities and institutional structures to engage with.

DOCUMENT #2 - Keeping Research on Track II: 
Research agreements

Research agreements, Page 8

The guidelines focus strongly on ‘negotiated formal agreements’. It may not always be possible or appropriate to have a formal agreement, for example if research does not focus on a particular community. We are concerned that the complexity and legal nature of these documents could discourage some Aboriginal and Torres Strait Islander people or communities from participating in research, it could also discourage researchers. 

Rights about participating in research

The right to check on the researcher’s track record, Page 11

It could be good practice for communities and organisations to check on the researcher's track record of working with Aboriginal and Torres Strait Islander Peoples, even if the communities and organisations have not employed the researchers.

The right to suspend or withdraw from a research project, Page 11

The guide states that if “trust is broken, participants and communities have the right to: ask the HREC contact person for help”. Further advice or guidance for the HREC on the role of the HREC contact person in addressing these issues would be useful. Possible revised wording could be “contact the approving HREC in accordance with the HREC’s published complaints process”.

The eights steps of the research journey (introduction and checklist)

The eight steps of the research journey, Pages 13-15

The table contains a reference to “Research participants sign individual consent forms”. It would be beneficial to update this to reflect the different ways participants can give consent, as described in Section 2.2.5 of the National Statement.

1. Building relationships

Questions to ask the research team, Page 19

This section addresses research which involve both Aboriginal and Torres Strait Islander Peoples and having consultation from both groups. Another point is to ensure consultation if the research is taking place between two groups of Aboriginal Peoples or two groups of Torres Strait Islander Peoples.

3. Developing the project and seeking agreement

Letter of support, Page 23

It is useful to see the requirement for a letter of support explicitly stated.

Looking after the project, Page 23

The suggestions for monitoring the project contain examples for research outside a community setting (e.g. a cultural mentor who keeps everything on track), which is useful.

General comments
Comments: 

The University of Tasmania thanks the National Health and Medical Research Council (NHMRC) for the opportunity to comment on the revised Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders; and Keeping Research on Track ll. These documents play an important role in guiding the design and conduct of ethical and culturally appropriate research.

An internal consultation was conducted to obtain feedback on the revised guidelines from the academic community, the University’s two Human Research Ethics Committees (HRECs) and experts in the area of intellectual property and copyright. We are pleased to submit the following comments on behalf of the University of Tasmania.

The University of Tasmania endorses the response of the Pro Vice-Chancellor Aboriginal Research and Leadership, Professor Maggie Walter, namely that the following changes to the guidelines be commended:

  • That the topic of consent is directly addressed and defined more clearly
  • Increased emphasis on risk management processes
  • Increased emphasis on the need for written agreements between research participants and researchers, including details of the content of such agreements
  • Inclusion of additional practical suggestions on how to ensure research is ethical
  • The direct reference to UNDRIP as part of the overall picture of research ethics

The University supports Professor Walter’s recommendations that the guidelines be further reviewed to reflect:

  • Contemporary approaches to Indigenous research, with particular consideration to the language of the document
  • The diversity of Aboriginal and Torres Strait Islander research practice, including research based around: social media; geo-spatial mapping, big data and community led research
  • The rising number of Aboriginal and Torres Strait Islander researchers, including ethical issues created by researching within one’s own community, and how to work ethically with Indigenous researchers
  • Information regarding data sharing and reuse, data linkage and data power
  • Principles of Indigenous Data Sovereignty and how these can be incorporated into research practice

Advice from researchers in genetic research at the University suggests that there is also a need for explicit guidance to be provided in this area. Given the very specific ethical and legal issues raised by genetic research, which are recognised in the National Statement generally, there is a need for specific guidance on genetic research with Aboriginal and Torres Strait Islander peoples and communities.

The University of Tasmania would encourage the NHMRC to consider a national communication and education campaign following the release of the guidelines, including possible training for HREC members.

Comments in relation to Intellectual Property

The University of Tasmania acknowledges that there is some complexity around intellectual property rights and how they can be used to protect traditional knowledge, genetic resources and traditional cultural expressions.

Advice from the University’s experts in this area suggests that, within the revised guidelines, the concepts of intellectual property rights, moral rights, co-authorship and acknowledgement have been confused. We recommend that the legal distinctions and practical differences with regards to the guidelines be further clarified. As part of this, we suggest that the definitions of copyright and intellectual property given in the guidelines be reviewed.

It appears that the main focus of the guideline is on one form of intellectual property only, specifically copyright. However, we suggest that the guidelines would benefit from addressing intellectual property rights more broadly.

The guidelines also make reference to co-ownership, joint ownership or sharing of intellectual property. We suggest that the use of these terms be made clear through definition and explanation.

Comments in relation to genetic research

Advice from researchers in genetic research at the University suggests that there is a need for explicit guidance to be provided in this area. Given the very specific ethical and legal issues raised by genetic research, which are recognised in the National Statement generally, there is a need for specific guidance on genetic research with Aboriginal and Torres Strait Islander peoples and communities.

We suggest that this specific guidance should recognise the importance of including Indigenous communities in genetic research if they are to also benefit from the advances that are being made in genomic medicine.

Specifically, it would be helpful to address:

  • Issues relating to justice – to avoid both overburdening or excluding particular communities
  • Long term storage and access to samples from Indigenous participants for subsequent research, including sharing of genetic data so that Indigenous participants are not excluded from meta-analyses or consortia research

General comments on the guidelines

The University suggests that the guidelines should distinguish between targeted and incidental recruitment of Aboriginal and Torres Strait Islander peoples.

There is a strong focus throughout both documents on research being conducted in communities. Aside from research agreements, this is also reflected in the section on cultural continuity, which describes the value of respect being addressed through establishing a community advisory group. We suggest that this be expanded to address the value of respect in research conducted in settings outside a community.

Each of the six core values have had the links to the National Statement (NS) updated to reflect the current version of the NS. Should specific reference also be made to Chapter 4.7: Aboriginal and Torres Strait Islander Peoples?

We recommend that the guidelines include more specific guidance with regard to ensuring participants and communities have an understanding of the intended nature of the dissemination of results beyond that of academic publication. This would include consideration of media attention and the growing use by institutions of mediums such as social media to demonstrate the impact of their research.

The guidelines do not appear to address research which builds on previously published or unpublished material or data. There could be cultural, consent and intellectual property implications associated with such research, and therefore we recommend that the guidelines be expanded to include research involving data reuse.

We suggest that numbering sections and sub-sections within the guidelines would make referencing the guidelines easier for all stakeholders, including researchers and Human Research Ethics Committees.

Page reviewed: 2 August, 2018