Values and Ethics – Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research
Values and Ethics – Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research Legal Rule or Regulation
- Author(s): National Health and Medical Research Council,
- Published: 2003
Abstract: The document contains guidelines for ethical health research on Aboriginal and Torres Strait Islander peoples. In accordance with guidance from Aboriginal people it is written around a framework of Aboriginal and Torres Strait Islander values and principles. Over the course of the previous two triennia (1994–6 and 1997–9), the previous Australian Health Ethics Committee (AHEC) reviewed and revised the NHMRC Statement on Human Experimentation and Supplementary Notes (1992). These were the guidelines on the ethics of health research for the whole community, to provide protection to all Australians, including Aboriginal and Torres Strait Islander Peoples. That review led to the issuing in 1999 of the National Statement on Ethical Conduct in Research Involving Humans (the National Statement). When revising the National Statement, AHEC was informed, both in submissions and in personal representations at public forums, that Aboriginal and Torres Strait Islander communities, researchers and health organisations still saw a clear need for a separate, complementary set of guidelines covering research in Aboriginal and Torres Strait Islander health. They also heard that the 1991 Interim Guidelines on Ethical Matters in Aboriginal and Torres Straight Islander Health Research (the Interim Guidelines) were in need of review and updating. In response to that feedback AHEC undertook to follow up the new National Statement by reviewing the 1991 Interim Guidelines over the course of AHEC’s three-year term, which finished in mid-2003. It is noteworthy that the Interim Guidelines took a number of years to develop. Three major meetings facilitated by the National Aboriginal and Islander Health Organisation and/or the National Health and Medical Research Council (NHMRC) were held over the last years of the 1980s. These meetings involved a wide range of stakeholders and led eventually to the current 1991 Interim Guidelines, which have had a high degree of community ownership. Much has changed since the development of the Interim Guidelines. New collaborative partnerships involving research institutes and the community, including the Aboriginal community controlled health sector, have emerged. There are now more Aboriginal and Torres Strait Islander people involved in research as researchers. The level of interest in research as a way to contribute to the health of Aboriginal and Torres Strait Islander Peoples has grown and with it the level of NHMRC funding. However, some Aboriginal and Torres Strait Islander Peoples and organisations remain mistrustful of the enterprise of research itself.