Academic journal article Cross / Cultures

Disturbing Pasts and Promising Futures: The Politics of Indigenous Genetic Research in Australia1

Academic journal article Cross / Cultures

Disturbing Pasts and Promising Futures: The Politics of Indigenous Genetic Research in Australia1

Article excerpt

IN A WORLD WHERE KNOWLEDGE ABOUT HUMAN GENETIC VARIATION is increasingly circulated, Indigenous Australians are prominent dissenters. Since refusing to participate in the Human Genome Diversity Project in the 1990s, Indigenous Australians have largely continued to eschew genetic research and are rarely included in surveys of 'worldwide' genetic variation.2 Within the scientific literature, only thirty-seven genetic studies of any kind in Indigenous communities have been published since 1979.3 As a comparison, a search of the U S National Library of Medicine (PubMed) database for the keywords 'Native Americans' and 'genetics' yields 1,642 studies published since 1963. Given this discrepency, it is not surprising that a recent review of public-health genomics in Australia concluded that "very little is known about the specific genetic issues relevant to Indigenous Australians."4

Why have Indigenous Australians resisted genetic research, and resisted it so successfully? Some of the reasons relate to risks that apply to all participants in genetic research (such as fears of implications for insurance). Other factors apply to Indigenous people the world over, such as the potential for population genetics to contradict cultural beliefs about human origins. Still other factors I will explore in this essay are specific to the Australian context.

In attempting to explain why Indigenous Australians are largely absent from the global stock of genetic knowledge, I will provide an overview of the politics of Indigenous genetic research in Australia, a context about which very little has been written. I will draw on published literature and media coverage of Indigenous genetics in Australia and beyond, as well as my ongoing ethnographic research with geneticists who work in Indigenous communities.5 To begin with, however, I briefly outline some characteristics of the Indigenous population of Australia, the health status of Indigenous Australians, and the efforts that have been made to improve Indigenous health through effective and culturally appropriate research.

I Indigenous Australians and Indigenous Health Research

Indigenous Australians are those who are descended from the precolonial inhabitants of the Australian continent and associated islands. At the most recent census in 2006, Indigenous Australians numbered 517,000 people, amounting to approximately 2.5% of the total population.6 It is important to appreciate the diversity of the Indigenous population of Australia. Before European colonization, there were between 350 and 750 distinct social groupings in Australia, each with a distinct language.7 Today, only 12% of Indigenous people speak an Indigenous language at home, and only twenty Indigenous languages are widely spoken (including many creóles). The remainder of the Indigenous population speaks Standard and/or Aboriginal English as their first language.8 The contemporary Indigenous population is also diverse geographically, with 32% living in major cities, 43% living in regional centres, and 26% living in remote areas. While the definition of indigeneity in Australia does not refer to blood quantums, sustained high rates of intermarriage, as well as sexual violence perpetrated by white men on Aboriginal women, mean that most Indigenous Australians have both Indigenous and non-Indigenous ancestors.

Overall, the Indigenous population is younger, less employed, less educated, and has higher mortality rates than the general population. An excess of chronic diseases (such as heart and kidney disease and diabetes) and injuries means that there is a substantial life-expectancy gap.9 At birth, an Indigenous male baby can expect to live 11.5 years fewer than a non-Indigenous child, and the figure is 9.7 years for females.10 The reasons behind the poor health of Indigenous Australians are complex and multifactorial. The proximal reasons include poor housing, poor nutrition, high rates of smoking and substance use, and discrimination especially within health care. …

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