Ethical guidelines for research involving Aboriginal and Torres Strait Islander Peoples

NHMRC is reviewing the following guidelines:

NHMRC is committed to setting high standards in ethics in health care and research. A cornerstone of an ethical research relationship with Aboriginal and Torres Strait Islander Peoples is respect for and valuing of cultural and language diversity, and the principles and values of Aboriginal and Torres Strait Islander Peoples. Research must be conducted in an ethical and culturally safe and appropriate manner so as to protect the health, safety and well-being of Aboriginal and Torres Strait Islander Peoples and their communities.

Values and Ethics was developed primarily for researchers and Human Research Ethics Committees (HRECs) to inform them of the considerations necessary in designing and conducting appropriate research in Aboriginal and Torres Strait Islander communities. Keeping Research on Track is the translation of this guideline into concrete expectations, actions and outcomes for all involved in research.

The intent of the review of these guidelines is to ensure that guidance about research involving Aboriginal and Torres Strait Islander peoples continues to be up-to-date and relevant.

The Australian Health Ethics Committee (AHEC) is overseeing the review and an expert working committee has been established to provide advice to AHEC about the review. The significant expertise of the members of this working committee will help to ensure the full engagement of both Aboriginal and Torres Strait Islander communities and the research community, and the robustness of the final documents.

The Australian Research Council and Universities Australia are actively participating in the development of the revised guidelines with a view that the final revised guidelines will be jointly published by all three organisations.

Public consultation on the revised guidelines is now open (see below). Additional information is also provided below about:

  • the evaluation of the existing guidelines, undertaken in 2013
  • establishment of the Indigenous Research Ethics Guidelines Review Working Committee, which is undertaking this review
  • work of the committee to date
  • next steps.

Public consultation on the revised guidelines

Two revised guidelines have been developed:

  • Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders
  • Keeping research on track II.

These draft guidelines have now been released for public consultation. Feedback on the draft documents is welcomed. More information on how to make a submission as part of this process is available on the NHMRC public consultation portal.

The draft Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders is a revised version of Values and Ethics and has undergone significant revision. It provides information about designing and conducting ethical and culturally appropriate research; and details the six core values to ensure all human research undertaken for Aboriginal and Torres Strait Islander Peoples and communities:

  • respects the shared values of Aboriginal and Torres Strait Islander Peoples
  • is relevant for Aboriginal and Torres Strait Islander priorities, needs and aspirations
  • develops long-term ethical relationships among researchers, institutions and sponsors
  • develops best practice ethical standards of research.

This guideline is primarily for researchers and Human Research Ethics Committees (HRECs), although research participants and other stakeholders may find it useful. 

The draft Keeping research on track II is a revised version of Keeping Research on Track, but as there were minimal revisions the title has been retained.  Keeping research on track II is primarily for research participants and communities, and provides information on how to apply and demonstrate the six core values as outlined in Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders.

The documents are intended to complement each other and should be used in conjunction. The scope of both draft guidelines has been broadened to cover research across all disciplines, whereas the previous guidelines were focused on health research.

Initial steps - Evaluation of the guidelines

NHMRC commissioned an evaluation of the two guidelines to inform their future revision. This evaluation was undertaken on behalf of NHMRC by the Lowitja Institute, in conjunction with the Australian Institute of Aboriginal and Torres Strait Islander Studies.

The evaluation was conducted throughout July-October 2013, and included extensive consumer engagement via consultation and workshops held in all states and territories.

Recommendations from the evaluation report include considerations for the revision of the two guidelines; developing training and orientation for stakeholders; increased assessment and monitoring; and targeting key stakeholders to increase uptake of the revised guidelines. NHMRC and its working committee have focused on the issues that are in scope for the review of the two guidelines and that are within the remit of NHMRC, namely the revision and implementation of the two guidelines.

Outcomes from the evaluation

Report

Literature Review

Indigenous Research Ethics Guidelines Review Working Committee

NHMRC has established the Indigenous Research Ethics Guidelines Review Working Committee to undertake this review.

Membership

Member membership expertise
Ms Chrissy Grant

Chair

Institution-based nominee from a Human Research Ethics Committee with expertise in Aboriginal and Torres Strait Islander research

Professor Samar Aoun

Member of the National Statement Review Working Group

Professor Yvonne Cadet-James Researcher with expertise in Aboriginal and Torres Strait Islander research
Professor Tom Calma AO Researcher with expertise in Aboriginal and Torres Strait Islander research
A/Professor Terry Dunbar Researcher with expertise in Aboriginal and Torres Strait Islander research
Ms Summer Finlay Member with expertise in Aboriginal and Torres Strait Islander health research
A/Professor Jane Freemantle Researcher with expertise in Aboriginal and Torres Strait Islander research
A/Professor Daniel McAullay Nominee from the Australian Health Ethics Committee
Mr Romlie Mokak Member with expertise in health policy
Dr Sanchia Shibasaki Torres Strait Islander representative with expertise in health research

Information on the disclosed interests of members of the Indigenous Research Ethics Guidelines Review Working Committee

Terms of Reference

  1. Based on the evaluation undertaken in July-October 2013, to advise the Australian Health Ethics Committee (AHEC) on the revision of both:
    • Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Research 2003
    • Keeping Research on Track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics 2005
  2. To develop final advice in the form of draft ethical guidelines for consideration by AHEC.
  3. To advise on any changes relevant to the National Statement on Ethical Conduct in Human Research, 2007.
  4. The Indigenous Research Ethics Guidelines Review Working Committee will be effective for the period 1 January 2015 to 31 December 2017.

Progress to date

The release of the draft documents for public consultation has followed an extensive revision process undertaken by the IREG Review Working Committee, which has carefully considered how best to implement recommendations from the evaluation. The draft documents aim to build on the strengths of the current guidelines, while ensuring they remain up-to-date and relevant for Aboriginal and Torres Strait Islander Peoples and communities, researchers, Human Research Ethics Committees (HRECs) and other stakeholders.

The draft documents have also been reviewed by NHMRC’s Principal Committee Indigenous Caucus (PCIC), and the Australian Health Ethics Committee (AHEC), which is overseeing the review. Following this process, the Council of NHMRC recommended that the revised guidelines be released for public consultation, in line with the requirements of the National Health and Medical Research Council Act 1992.

Next steps

Once the public consultation period has closed, all submissions will be considered by the IREG Review Working Committee. A final version of the guidelines will then be submitted to relevant NHMRC committees for review, before consideration by NHMRC Council and release of the final documents.  Both documents will be prepared for publication, including design and layout, prior to their final release.

Registering your interest

If you would like to receive information about the review as it progresses, please register your interest via email to NHMRC (ethics@nhmrc.gov.au)

Further information

Please contact NHMRC at ethics@nhmrc.gov.au.