Genetic Research and Aboriginal and Torres Strait Islander Australians
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While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of “victim-blaming” approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted.
KeywordsGenetic research Ethical issues Indigenous Aboriginal Torres Strait Islander Research governance
Lobna Rouhani assisted with literature reviews for this article. Research on Aboriginal genetics carried out in the Blackwell laboratory is funded by the NHMRC and approved by WAAHIEC.
Details of Funding Support
EK is supported by an Australian National Health and Medical Research Council Training Fellowship for Aboriginal and Torres Strait Islander Health Research (#454813). GP is supported by an NHMRC Centre for Clinical Excellence. CP is funded by an ARC Future Fellowship (#FT0992120) and an NHRMC Project Grant (#634403). SJ is supported by NHMRC Project Grants (#APP1003817 and #634301) and a Brightspark Foundation Fellowship. JB is supported by an NHMRC Project Grant (#634301), a National Institutes of Health RO1 grant (AI076233-01), and the NIH Tropical Medicine Research Centre (#1P50AI074321-01).
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