Research, information and consent for the Australian Health Survey: a separate standard for Indigenous people?

To the Editor: Recently, Professor Hoy argued for the full inclusion of Aboriginal and Torres Strait Islander people in the Australian Health Survey (AHS), including the measurement of clinical variables and the proposed sample repository.1 Although much of the argument is plausible, several points were overlooked that make it untenable overall.

First, the current study design arose with input from at least five Indigenous representative bodies, including the National Aboriginal Community Controlled Health Organisation.2 They identified social and cultural issues as priority areas to be addressed — correctly so, as the underlying causes of health disparity are located in these domains, not primarily in the clinical and biomedical aspects of the AHS. The input from these major national bodies cannot be ignored.

Second, yes — there are concerns that “the stored samples and their results might be somehow misused”.1 These concerns are legitimate and well founded in historical and contemporary experiences of Indigenous people. The argument for applying “current scientific and epidemiological knowledge, methods and safeguards”1 to the use of information held in the AHS is correct as far as it goes, but ignores equally important Indigenous knowledge and methodologies, Indigenous intellectual property issues, the principles of “ownership, control, access and possession” of Indigenous information,3 and certain aspects of the United Nations Declaration on the Rights of Indigenous Peoples. This position is therefore inconsistent with the National Health and Medical Research Council guidelines on values and ethics in Aboriginal and Torres Strait Islander health research, particularly as they relate to “survival and protection”.4

Third, denying Indigenous people control over how their health information is used by mainstream research institutions prevents accountability of researchers to communities. Using and publishing this information requires review by relevant experts, in this case Aboriginal and Torres Strait Islander community representatives. Biomedical expertise alone is insufficient to enable effective peer review and, at worst, it risks promoting destructive policies that ignore social, cultural and political realities for Aboriginal people and Torres Strait Islanders.

Aboriginal people and Torres Strait Islanders rightly feel that they have been one of the most researched groups in history. And yet, even with this background of decades of being constantly studied, researched and examined, it seems that there is still not enough information being collected. Wellbeing is “grounded in the respect given to people, and the control afforded to them, in their daily lives”.5 Sometimes it’s up to Aboriginal and Torres Strait Islander people to identify what is important in Aboriginal and Torres Strait Islander health: it’s our health!