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Ethical genetic research in Indigenous communities: Challenges and successful approaches{star, open}

journal contribution
posted on 2022-11-29, 22:56 authored by Rebekah McWhirterRebekah McWhirter, D Mununggirritj, D Marika, J L Dickinson, J R Condon
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. © 2012 Elsevier Ltd.

History

Journal

Trends in Molecular Medicine

Volume

18

Pagination

702 - 708

ISSN

1471-4914

eISSN

1471-499X

Publication classification

C1 Refereed article in a scholarly journal; C1.1 Refereed article in a scholarly journal