Journal of Bioethical Inquiry

, Volume 9, Issue 4, pp 419–432

Genetic Research and Aboriginal and Torres Strait Islander Australians

  • Emma Kowal
  • Glenn Pearson
  • Chris S. Peacock
  • Sarra E. Jamieson
  • Jenefer M. Blackwell
Symposium

DOI: 10.1007/s11673-012-9391-x

Cite this article as:
Kowal, E., Pearson, G., Peacock, C.S. et al. Bioethical Inquiry (2012) 9: 419. doi:10.1007/s11673-012-9391-x

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.

Keywords

Genetic researchEthical issuesIndigenousAboriginal Torres Strait IslanderResearch governance

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Emma Kowal
    • 1
  • Glenn Pearson
    • 2
  • Chris S. Peacock
    • 3
  • Sarra E. Jamieson
    • 2
  • Jenefer M. Blackwell
    • 2
  1. 1.School of Social and Political SciencesUniversity of MelbourneMelbourneAustralia
  2. 2.Telethon Institute for Child Health ResearchWest PerthAustralia
  3. 3.University of Western AustraliaPerthAustralia