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Review of Aboriginal and Torres Strait Islander research ethics guidelines submission

ID: 
30
This submission reflects the views of
Organisation Name: 
Curtin University
Personal Details
Specific Questions
Question 1: 
Curtin recognises that the multi-disciplinary focus is not reflected in language of the documents, and in attempting to focus on multi-disciplinary research there appears to be a loss of specificity for some disciplines which makes the document ambiguous and difficult to apply to all discipline areas.
Question 2: 
Curtin considers intellectual property (IP) primarily a governance issue, however it recognises the importance of ownership and IP in Aboriginal and Torres Strait Islander communities. The documents lack specificity relating to “background IP” and “generated IP”, and there is no provision for consideration of other contractual arrangements with funding bodies, or other third parties. Information regarding IP and ownership very broad, which is understandable, however it lacks reflection on the nuances of different types of research, and indeed different types of IP for different types of research. Of particular note is the notion of a “formal agreement”. Perhaps softer wording around agreements should be included, and a risk based approach should be adopted in circumstances where are an agreement is needed or would be of benefit. In addition to this, no guidance is provided in the document to the community (or the institution) about who signs off on such arrangements or if communities need to seek legal advice. Finally issues around students, students thesis and the copyright associated with thesis’ or publications are not mentioned. Curtin recommends careful consideration of the information presented to research participants and communities about IP and copyright.
Question 3: 
Case studies may be useful, however clear articulation of application of the principles, rather than case studies, may be more beneficial. If case studies are to be included, perhaps a bank of case studies on a website which the documents refer to will ensure these are regularly updated and are more dynamic and agile to keep up to date with the changing research environment. Case studies may be useful in the areas of: • How informed consent may be obtained. • Examples of how participants can start conversations about research or driving research. • Examples of multi-site and multi-state cases that have worked well and how they worked well. • Examples of positive experiences with government research, mining research, university research etc. • Examples of what happens when things go wrong and how they were resolved.
Questions related to sections of the document
DOCUMENT #1 - Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: 
Research agreements

Both the Ethical Conduct and Keeping Research on Track II document refer to a formal agreement between researchers (supposedly the institution) and participants. Curtin would like further clarification in both documents about this. For example, is it necessary for all types of research, who signs off at an institutional level, who signs off for participants, does each participant need an individual agreement, would a memorandum of understanding be more appropriate, should formal agreements be determined on a risk basis, do participants need legal representation? Curtin feels this area need clearer explanation for participants, researchers and institutions.

Intellectual property

While the sections the regarding intellectual property (IP) has been expanded in the Ethical Conduct document as well as the Keeping Research on Track II document, there are gaps regarding the practicalities of assignment of IP (and copyright). Better explanation on how exactly IP is assigned, when is this done, and if it is to be included in a contractual arrangements should be considered.  There needs to be clearer descriptions about  the difference between background and generated IP, potential of IP and commercialization opportunities, when legal advice should be sought, IP considerations  for different types of research, how is the IP of students protected, how is IP considered in the context of contractual arrangements or university policy? Consideration should also be given about whether IP is a governance or ethics issue.

Intended audience

Curtin would like to note that co-authorship should also meet the requirements of the Australian Code for the Responsible Conduct of Research.

Respect

On page 16, the section “demonstrating respect” states “include risk management strategies to prevent, identify and address any harm associated with ignoring cultural difference and diversity”, which implies that cultural differences and diversity has purposely been ignored. How then does this demonstrate respect?

DOCUMENT #2 - Keeping Research on Track II: 
Intended audience

Curtin has some concerns regarding sections of the Keeping Research on Track II document. Most serious is the distribution of this document to the lay community who would likely be research participants. Curtin would like to see how this document would be disseminated to the community, and in what form, to ensure communities are aware of these guidelines and that they are presented in a way that a lay person may understand them.

Introduction

Curtin feels it may be useful to include information for communities and participants about legislative, regulatory and university requirements that researchers need to comply with. Currently the Keeping Research on Track II document does not inform communities and participants that researchers may be bound by these requirements that may restrict what researchers can or cannot agree to.

About this resource

The final sentence on page 5 states “A full list of issues to be covered can be found on page 11”. Curtin suggests softening the wording of “issues” to perhaps “considerations”.

Starting a research journey

Page 6 provides examples of government or industry requested research. While it is a minor point Curtin would like to put forward a consideration to have the example read “research may be carried out in partnership with government departments, universities, research institutes and private business including but not limited to mining companies and pharmaceutical companies”.

Rights about participating in research

Curtin suggests including less formal language around Advisory Groups or Steering Committees that is currently described on Page 10. Perhaps inclusion of reference groups, the composition of these groups, and where they are appropriate for the scope of work may be useful. For example, having a formal Advisory Group consisting of multiple people for a piece of qualitative work with 1 or 2 participants may not be feasible or practical.

 

Page 11 and 12 makes reference to the Human Research Ethics Committee (HREC) and that they may be able to help regarding breach of a formal agreement, however this is beyond the scope of the duties of a HREC. In addition to this, throughout the document, there is reference to a “HREC contact person”. Again, this is outside the scope of the HREC. Curtin strongly suggests these points are removed, and instead make reference to a Research Integrity Advisor, as described in the Australian Code for the Responsible Conduct of Research, or a liaison person within the Institution who would be better suited to this role.

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

On page 13 the reference to “the eight steps of the research journey” implies all steps need to be completed, however this may not be the case. Curtin suggests consideration of using the word “features” instead of “steps”.

 

Table 1 on pages 14 and 15 is quite demanding and daunting for participants. In sections 2 and 3, the engagement with community as described in the text is lost within the format of a table. Section 4 notes the “research participants sign individual consent forms” is a responsibility of the community, however this is the responsibility of the research. Also in this section, there should be mention of informed consent in the researcher column. Finally, in section 6, consideration should be given to the text “plain language” instead of “plain English”.

2. Developing the research idea

On pages 20 and 21, other questions that may be considered in “Questions for the Aboriginal and Torres Strait Islander participants and community” include “what do we need to do”, “what will our involvement be”, and “what are the risks”?

4. Data collection

The Data Collection section on Page 26 does not give reference to data storage rules institutions are bound by under the Australian Code for the Responsible Conduct of Research, and the Western Australian University Sector Disposal Authority (for Western Australian Universities). Consider  adding “where possible” at the start of “having the option to either have the data returned to participants …” may be beneficial to cover different disciplines of research. Curtin suggests in this section, and potentially others, under “Questions for the Aboriginal and Torres Strait Islander participants and community” if the answer to any of the questions are “no” then there should be question “if no, why not?”.

 

General comments
Comments: 

Curtin welcomes the continued review of guidelines and appreciates the attempts to simplify these documents. Curtin congratulates the IREG Review Working Committee on their work, and appreciates the efforts to ensure the health, wellbeing and safety of Aboriginal and Torres Strait Islander Peoples.

 

Linking of the Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (Ethical Conduct) with sections of the National Statement on Ethical Conduct in Human Research (National Statement) is positive, and helps bring the documents together.

 

The shift from “equality” to “equity” is a positive change to the document. So too is inclusion of the terminology “cultural continuity”. This, in conjunction with the monitoring and customs focus, is a positive step.

 

The National Statement provides a comprehensive section (4.7) on conducting research with Aboriginal and Torres Strait Islander Peoples, so too does the Australian Institute of Aboriginal and Torres Strait Islander Studies guideline entitled Guidelines for Ethical Research in Australian Indigenous Studies. There are currently four guidelines researchers conducting research with Aboriginal and Torres Strait Islander Peoples need to comply with. There are at times conflicting and largely redundant information between all four documents. These factors make research with Aboriginal and Torres Strait Islander people, and indeed researchers who identify as Aboriginal and Torres Strait Islander people, overly burdensome and bureaucratic, and potentially puts research at risk.

 

The explanatory material refers to respect of the “shared values of Aboriginal and Torres Strait Islander Peoples”. Curtin would like to acknowledge that there are shared values but also diversity amongst Aboriginal and Torres Strait Islander Peoples.

 

Curtin congratulates the IREG Review Working Committee on their commitment and effort into the redraft of the Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders and Keeping Research on Track II. The continued review of research guidelines for institutions, researchers and participants is welcomed. Curtin thanks the IREG for the opportunity to provide feedback on the documents as part of the public consultation call.

Page reviewed: 2 August, 2018