Before an application for ethics approval is prepared
Have I considered the Aboriginal and Torres Strait Islander ethical principles and what they mean in health research practice?
The National Health and Medical Research Council's Ethical conduct in research with Aboriginal and Torres Strait Islander peoples and communities: Guidelines for researchers and stakeholders and Keeping research on track II, both published in 2018, replace the previous Values and ethics: Guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (2003) and Keeping research on track: A guide for Aboriginal and Torres Strait Islander peoples about health research ethics (2005). Primarily created for Aboriginal and Torres Strait Islander community members and organisations, these updated editions provide clear guidelines on health research involving Aboriginal and Torres Strait Islander peoples. They aim to empower them:
- to become familiar with the stages of research and to get the most out of projects involving their communities
- to know their rights and responsibilities and provide a checklist of some of the issues they may need to consider in the research process
- to ensure the research respects shared values as well as the diversity, priorities, needs and aspirations of communities for the benefit of Aboriginal and Torres Strait Islander people.
Both volumes contain the same six values (see below) as originally described in Values and ethics, outline the research process in eight steps, describe what the rights and responsibilities of the researcher and the community are, and which questions the community can and should ask of the researcher. The six values:
- Spirit and integrity: A connection between the past, present and future, and the respectful and honourable behaviour that holds Aboriginal and Torres Strait Islander values together.
- Reciprocity: Shared responsibilities and obligations to family and the land based on kinship networks, also includes sharing of benefits.
- Respect: For each other’s dignity and individual ways of living. This is the basis of how Aboriginal and Torres Strait Islander peoples live.
- Equality: Recognising the equal value of all individuals. Fairness and justice, the right to be different.
- Survival and protection: Of Aboriginal and Torres Strait Islander cultures, languages and identity. Acknowledging shared values is a significant strength.
- Responsibility: Is the recognition of important responsibilities, which involve country, kinship, caring for others and maintenance of cultural and spiritual awareness. The main responsibility is to do no harm to any person or any place. Responsibilities can be shared so others can be held accountable.
The eight steps in the research process:
- Building relationships
- Conceptualisation – thinking
- Development and approval
- Data collection and management
- Analysis: looking at the meaning
- Report writing
- Dissemination – sharing the results
- Learning from our experience.
For examples of best practice in Aboriginal and Torres Strait Islander health research ethics see case studies and resources. Also see the Lowitja Institute resource Researching Indigenous health: A practical guide for researchers, chapter 2, 'Principles in Indigenous health research'.
Do I need ethics approval?
You will usually need ethics clearance if the health research project involves:
- clinical or epidemiological research
- data linkage or data release
- health services or population health research
- qualitative research.
This is true for any health research that involves Aboriginal and Torres Strait Islander participants, even if the project is working across other population groups.
Health research ethics proposals being submitted through a university, research institution, health service or hospital should be assessed by an Aboriginal and Torres Strait Islander-specific health research ethics committee. More information on these can be found in our national, state and territory contacts or by getting in touch with the National Aboriginal Community Controlled Health Organisation (NACCHO) or one of its eight state and territory affiliates.
If you are collecting ideas and information to plan a local project or evaluation of the service you provide, you may not need ethics approval. However, ethical considerations for working with Aboriginal and Torres Strait Islander participants still apply to quality assurance processes, so community consultation and ongoing communication are imperative.
What is informed consent?
What is informed consent? Informed consent enables Aboriginal and Torres Strait Islander health participants to be fully aware of the proposed scope of a health research project, what processes are involved, and how data and information will be collected and shared. This may require the researcher to simplify the health research language used, to provide visual/audio supports, and to consult with key community representatives including Elders. Once a trusting relationship has been established, an appropriate visual/audio recording or a written record of consent should be obtained.
Where can I find an ethics committee with Aboriginal and Torres Strait Islander expertise?
Find your local contacts
Acknowledging roles in the research partnership
A good partnership should reach agreement about the identification of individuals involved in the research, and the appropriate acknowledgment of those who took part in any publication or other research output. Where the contribution has been significant, the researcher should consider joint authorship with community members.
After the application has been approved
Some particular considerations or questions to be answered for the community or organisations involved are:
- Has the partnership agreement made clear to the community any requirements that may be involved?
- Have you provided information on how to resolve any problems or disputes?
- Are all parties and participants agreeable on the plan for ongoing knowledge translation?
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