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Ethical genetic research in Indigenous communities: challenges and successful approaches


McWhirter, RE and Mununggirritj, D and Marika, D and Dickinson, JL and Condon, JR, Ethical genetic research in Indigenous communities: challenges and successful approaches, Trends in Molecular Medicine, 18, (12) pp. 702-708. ISSN 1471-4914 (2012) [Refereed Article]

Copyright Statement

Copyright 2012 Elsevier Ltd.

DOI: doi:10.1016/j.molmed.2012.08.003


Indigenous populations, in common with all populations, stand to benefit from the potential of genetic research to lead to improvements in diagnostic and therapeutic tools for a wide range of complex diseases. However, many Indigenous communities, especially ones that are isolated, are not included in genetic research efforts. This situation is largely a consequence of the challenges of ethically conducting genetic research in Indigenous communities and compounded by Indigenous peoples' negative past experiences with genetic issues. To examine ways of addressing these challenges, we review one investigation of a cancer cluster in remote Aboriginal communities in Arnhem Land, Australia. Our experiences demonstrate that genetic research can be both ethically and successfully conducted with Indigenous communities by respecting the authority of the community, involving community members, and including regular community review throughout the research process.

Item Details

Item Type:Refereed Article
Keywords:genetic research, ethics, Indigenous communities, vulvar cancer, Arnhem Land
Research Division:Biomedical and Clinical Sciences
Research Group:Oncology and carcinogenesis
Research Field:Cancer genetics
Objective Division:Health
Objective Group:Clinical health
Objective Field:Clinical health not elsewhere classified
UTAS Author:McWhirter, RE (Dr Rebekah McWhirter)
UTAS Author:Dickinson, JL (Professor Joanne Dickinson)
ID Code:81717
Year Published:2012
Web of Science® Times Cited:17
Deposited By:Menzies Institute for Medical Research
Deposited On:2013-01-02
Last Modified:2013-04-18

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