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The American Journal of Bioethics Volume 23, 2023 - Issue 6
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Open Peer Commentaries

Community Engagement and the Protection-Inclusion Dilemma

Rebekah McWhirtera Deakin University;b Australian National UniversityCorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-9409-8074View further author information
ORCID Icon,
Azure Hermesb Australian National UniversityORCID Iconhttps://orcid.org/0000-0001-9142-2580View further author information
ORCID Icon,
Sharon Huebnerb Australian National UniversityORCID Iconhttps://orcid.org/0000-0002-8600-8972View further author information
ORCID Icon &
Alex Brownb Australian National UniversityORCID Iconhttps://orcid.org/0000-0003-2112-3918View further author information
ORCID Icon
Pages 100-102 | Published online: 23 May 2023

REFERENCES

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  • Friesen, P., Gelinas, L. A. Kirby, David, H. Strauss, and B. E. Bierer. 2023. IRBs and the protection-inclusion dilemma: Finding a balance. The American Journal of Bioethics 23 (6):75–88. doi:10.1080/15265161.2022.2063434.
  • Hudson, M., N. A. Garrison, R. Sterling, N. R. Caron, K. Fox, J. Yracheta, J. Anderson, P. Wilcox, L. Arbour, A. Brown, et al. 2020. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews. Genetics 21 (6):377–84. doi:10.1038/s41576-020-0228-x.
  • Huebner, S., A. Hermes, and S. Easteal. 2020. The practice of engaging aboriginal and Torres Strait islander communities in genome research. In Indigenous research ethics: Claiming research sovereignty beyond deficit and the colonial legacy, ed. Lily George, Juan Taori, and Lindsey Te Atao Tu MacDonald, 109–123. Bingley, UK: Emerald Publishing.
  • Kowal, E. 2012. Genetic research in Indigenous health: Significant progress, substantial challenges. The Medical Journal of Australia 197 (1):19–20. doi:10.5694/mja12.10531.
  • McWhirter, R., D. Nicol, and J. Savulescu. 2015. Genomics in research and health care with Aboriginal and Torres Strait Islander peoples. Monash Bioethics Review 33 (2-3):203–9. doi:10.1007/s40592-015-0037-8.
  • McWhirter, R. E., D. Mununggirritj, D. Marika, J. L. Dickinson, and J. R. Condon. 2012. Ethical genetic research in Indigenous communities: Challenges and successful approaches. Trends in Molecular Medicine 18 (12):702–8. doi:10.1016/j.molmed.2012.08.003.
  • Popejoy, A. B., and S. M. Fullerton. 2016. Genomics is failing on diversity. Nature 538 (7624):161–4. doi:10.1038/538161a.
  • United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP). 2007. GA Res 61/195, UN Doc A/RES/61/295, September 13.
  • Waanders, A. A., Brown, N. R. Caron, A. Plisiewicz, S. T. McHugh, T. Q. Nguyen, K. Lehmann, J. Stevens, P. J. Storm, A. Resnick, et al. 2023. Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement. Neoplasia 37:E 100879. doi:10.1016/j.neo.2023.100879.

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