Before an application for ethics approval is prepared
Keeping Research on Track is the translation of Values and Ethics into a community guide. It was developed in 2005 by the NHMRC. It is written to provide clear guidelines in health research involving Aboriginal and Torres Strait Islander peoples and was created specifically for Aboriginal and Torres Strait Islander community members and organisations. It primarily aims to empower Aboriginal and Torres Strait Islander people to get the most out of research projects, to know their rights and responsibilities and a checklist of what some important considerations may be.
It contains the same six values (see below) as described in Values and Ethics. It also outlines the research process in eight steps and describes what the rights and the responsibilities of the researcher and the community are, and which questions the community can ask from the researcher.
The six values are described as follows:
- Spirit and integrity: A connection between the past, present and future, and the respectful and honourable behavior 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.
In addition to these values the next eight steps in the research process are described as:
- 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.
If the health research project involves clinical or epidemiological research, data linkage or data release, health services or population health research, or qualitative research you will usually need ethics clearance. This is true for any inclusion of Aboriginal and Torres Strait Islander participants, even in the event that the health research is working across other population groups.
For health research ethics proposals being submitted through a university system or research institution or health services and hospitals, the health research proposal should be assessed through an Aboriginal and Torres Strait Islander specific health research ethics committee See: National, State and Territory contacts or contact National Aboriginal Community Controlled Health Organisation (NACCHO) or the relevant state 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. Of course ethical considerations for working with Aboriginal and Torres Strait Islander participants still apply to quality assurance processes and, community consultation and ongoing communication is imperitive.
Informed consent for Aboriginal and Torres Strait Islander health research enables participants to be fully aware of the proposed scope of the health research project, what processes are involved and how data and information will be collected and shared. This may require the researcher to translate, provide visual supports and simplify health research language, and also to consult with key representatives of the community, including Elders. Once a trusting relationship has been established, an appropriate visual or audio recording or a written record of consent should be obtained.
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. Where the contribution has been significant, the researcher would 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 been clear on the requirements for the Aboriginal and Torres Strait Islander community?
Have you provided information on resolving problems and disputes?
Are all parties and participants agreeable on the plan for ongoing knowledge exchange?