File(s) under permanent embargo
Ethical genetic research in Indigenous communities: challenges and successful approaches
journal contributionposted on 2023-05-17, 15:10 authored by Rebekah McWhirterRebekah McWhirter, Mununggirritj, D, Marika, D, Joanne DickinsonJoanne Dickinson, Condon, JR
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.
Publication titleTrends in Molecular Medicine
Department/SchoolMenzies Institute for Medical Research
PublisherElsevier Sci Ltd
Place of publicationThe Boulevard, Langford Lane, Kidlington, Oxford, England, Oxon, Ox5 1Gb
Rights statementCopyright 2012 Elsevier Ltd.