title: Genetic research and aboriginal and Torres Strait Islander Australians.
abstract: 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.
authors.affiliation: School of Social and Political Sciences, University of Melbourne, Melbourne, Victoria, 3010, Australia. e.kowal@unimelb.edu.au
authors.forename: Emma
authors.initials: E
authors.lastname: Kowal
authors.forename: Glenn
authors.initials: G
authors.lastname: Pearson
authors.forename: Lobna
authors.initials: L
authors.lastname: Rouhani
authors.forename: Chris S
authors.initials: CS
authors.lastname: Peacock
authors.forename: Sarra E
authors.initials: SE
authors.lastname: Jamieson
authors.forename: Jenefer M
authors.initials: JM
authors.lastname: Blackwell
mesh_terms: D001315:Australia; D018070:Biological Specimen Banks / Q000941:ethics*; D003219:Confidentiality; D034462:Dissent and Disputes; D036281:Genetic Research / Q000941:ethics*; D005828:Genetics, Population / Q000941:ethics; D016045:Human Genome Project; D006801:Humans; D007258:Informed Consent; D010067:Ownership; D012306:Risk; D000095283:Australian Aboriginal and Torres Strait Islander Peoples