The Lowitja Institute believes there is no point doing research into Aboriginal and Torres Strait Islander health unless Aboriginal and Torres Strait Islander people are involved at every step along the way, and their priorities are paramount.
Five key principles underpin our approach to research:
1. Beneficence to act for the benefit of Aboriginal and Torres Strait Islander people in the conduct of our research
2. Leadership by Aboriginal and Torres Strait Islander people
3. Engagement of research end-users, such as Aboriginal and Torres Strait Islander organisations and communities, policymakers, other potential research users
4. Development of the Aboriginal and Torres Strait Islander research workforce
5. Measurement of impact in improving Aboriginal and Torres Strait Islander people’s health.
This online resource aims to provide guidance – for researchers, the Aboriginal and Torres Strait Islander community participants, community organisations, supervisors and students, and ethics committees – as to the ethics of doing research in Aboriginal and Torres Strait Islander health. To enable best practice in engaging, working with and empowering Aboriginal and Torres Strait Islander communities around health research, it also provides:
- Information on ethics approval processes
- Ethics guidelines
- National, State and Territory contacts
- National and international resources
- Best practice case studies.
There are several definitions that define the difference between Aboriginal and Torres Strait Islander and non Indigenous health.
Aboriginal health means not just the physical wellbeing of an individual but refers to the social, emotional and cultural wellbeing of the whole community in which each individual is able to achieve their full potential as a human being, thereby bringing about the total wellbeing of their community. It is a whole-of-life view and includes the cyclical concept of life-death-life.
Quote taken from National Aboriginal Health Strategy, by National Aboriginal Health Strategy Working Party, 1989
The Aboriginal concept of health is holistic, encompassing mental health and physical, cultural and spiritual health. Land is central to wellbeing. This holistic concept does not merely refer to the ‘whole body’ but in fact is steeped in the harmonised inter-relations which culturally constitute wellbeing. These inter-relating factors can be categorised largely as spiritual, environmental, ideological, political, social, economic, mental and physical. Crucially it must be understood that when the harmony of these interrelations is disrupted, Aboriginal ill-health will persist.
Quoted in Ways Forward: National Aboriginal and Torres Strait Islander Mental Health Policy National Consultancy Report, by P. Swan & B. Raphael, Australian Government, 1995
The Dance of Life. The dimensions include the biological or physical, the psychological or emotional, the social, the spiritual and finally, but most importantly, the cultural dimension. Within each dimension there are additional layers to consider, including the historical context, the traditional and contemporary perspective, as well as our gaps in knowledge.
The Dance of Life – by Professor Helen Milroy, 2002 – is the last painting in a series depicting a multi-dimensional model of health and wellbeing from an Aboriginal perspective.
Ethics is really about how people should live in relation to other people, animals and the environment. In research this means treating people fairly, with respect and with dignity.
In practice, ethics means that researchers should:
- respect people’s individual wishes;
- make sure that people are not harmed by research;
- only do research that will benefit the people or Community being researched;
- make sure people are fully informed about the aims and purposes of the research;
- keep people informed about the methods and the research processes being used;
- ensure confidentiality of individuals and Communities;
- negotiate ownership of data; and
- be concerned about the way the outcomes of the research may affect individuals or the Community.
Unfortunately, not all researchers have applied these principles in research with Aboriginal and Torres Strait Islander people. For many years now there has been great concern within Aboriginal and Torres Strait Islander Communities and amongst some non-Indigenous researchers about the processes of researching Aboriginal and Torres Strait Islander health issues. People have expressed concern and often anger about a whole range of things such as:
- To what extent do Aboriginal and Torres Strait Islander people actually ‘consent’ to being involved in particular research projects?
- Who does and should control the ‘research agenda’?
- Who actually benefits from much of the research undertaken?
- What happens to data about Aboriginal and Torres Strait Islander people after it has been collected?
Quote taken from Victorian Aboriginal Ethics Project Report, A Community Report from Onemda VicHealth Koori Health Unit, by P. Pyett & P. Stewart, The University of Melbourne, 2005