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 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 document.

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 around Australia.

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 will focus 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.

First meeting of the working committee

The working committee held its first meeting on 20 February 2015. The committee’s initial thoughts were:

  • The guidelines should provide advice for all human research rather than health research alone.
  • The guidelines should provide advice on engagement with Aboriginal and Torres Strait Islander communities (e.g. evaluations by government departments).
  • The guidelines should reflect the ethical principles underpinning human research in general (respect, beneficence, justice, merit and integrity) and the ethical principles specific to research involving Aboriginal and Torres Strait Islander peoples.

Principles and values that the working committee is considering for incorporation into the guidelines include:

The working committee is currently determining the guiding principles that will underpin how the committee will approach the review and conduct itself in a manner that is respectful, collaborative and consultative.

Next steps

Consultations

Further consultations will occur during this review. The working committee is currently determining processes for how this will occur.

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.