A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol

Yeu-Yao Cheng^{1

2}, Jack Nunn³, John Skinner¹, Boe Rambaldini¹, Tiffany Boughtwood^{4

5}, Tom Calma¹, Alex Brown⁶, Cliff Meldrum⁷, Marcel E Dinger⁸, Jennifer A Byrne^{9

10}, Debbie McCowen¹¹, Jayden Potter¹¹, Kerry Faires¹¹, Sandra Cooper^{12

13

14}, Kylie Gwynne^{1

15}

Affiliations

¹ Poche Centre for Indigenous Health, The University of Sydney, Camperdown, NSW 2050, Australia.
² Faculty of Medicine and Health, The University of Sydney School of Medicine, Camperdown, NSW 2050, Australia.
³ School of Psychology and Public Health, La Trobe University, Melbourne, VIC 3086, Australia.
⁴ Australian Genomics Health Alliance, Melbourne, VIC 3052, Australia.
⁵ Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia.
⁶ South Australian Health and Medical Research Institute, Adelaide, SA 5000, Australia.
⁷ NSW Health Pathology, Sydney, NSW 2065, Australia.
⁸ School of Biotechnology and Biomolecular Sciences, UNSW, Sydney, NSW 2052, Australia.
⁹ New South Wales Health Statewide Biobank, New South Wales Health Pathology, Camperdown, NSW 2050, Australia.
¹⁰ School of Medical Sciences, Faulty of Medicine and Health, The University of Sydney, Camperdown, NSW 2006, Australia.
¹¹ Armajun Aboriginal Health Service, 1 Rivers Street, Inverell, NSW 2360, Australia.
¹² Kids Neuroscience Centre, Children's Hospital at Westmead, Westmead, NSW 2145, Australia.
¹³ Discipline of Child and Adolescent Health, The University of Sydney, Camperdown, NSW 2006, Australia.
¹⁴ The Children's Medical Research Institute, Westmead, NSW 2145, Australia.
¹⁵ Faculty of Medicine and Health Sciences, Macquarie University, Sydney, NSW 2113, Australia.

PMID: 34205718
PMCID: PMC8293410
DOI: 10.3390/mps4020042

A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol

Yeu-Yao Cheng et al. Methods Protoc. 2021.

. 2021 Jun 21;4(2):42.

doi: 10.3390/mps4020042.

Authors

Affiliations

¹ Poche Centre for Indigenous Health, The University of Sydney, Camperdown, NSW 2050, Australia.
² Faculty of Medicine and Health, The University of Sydney School of Medicine, Camperdown, NSW 2050, Australia.
³ School of Psychology and Public Health, La Trobe University, Melbourne, VIC 3086, Australia.
⁴ Australian Genomics Health Alliance, Melbourne, VIC 3052, Australia.
⁵ Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia.
⁶ South Australian Health and Medical Research Institute, Adelaide, SA 5000, Australia.
⁷ NSW Health Pathology, Sydney, NSW 2065, Australia.
⁸ School of Biotechnology and Biomolecular Sciences, UNSW, Sydney, NSW 2052, Australia.
⁹ New South Wales Health Statewide Biobank, New South Wales Health Pathology, Camperdown, NSW 2050, Australia.
¹⁰ School of Medical Sciences, Faulty of Medicine and Health, The University of Sydney, Camperdown, NSW 2006, Australia.
¹¹ Armajun Aboriginal Health Service, 1 Rivers Street, Inverell, NSW 2360, Australia.
¹² Kids Neuroscience Centre, Children's Hospital at Westmead, Westmead, NSW 2145, Australia.
¹³ Discipline of Child and Adolescent Health, The University of Sydney, Camperdown, NSW 2006, Australia.
¹⁴ The Children's Medical Research Institute, Westmead, NSW 2145, Australia.
¹⁵ Faculty of Medicine and Health Sciences, Macquarie University, Sydney, NSW 2113, Australia.

PMID: 34205718
PMCID: PMC8293410
DOI: 10.3390/mps4020042

Abstract

(1) Background: Genomic precision medicine (PM) utilises people's genomic data to inform the delivery of preventive and therapeutic health care. PM has not been well-established for use with people of Aboriginal and Torres Strait Islander ancestry due to the paucity of genomic data from these communities. We report the development of a new protocol using co-design methods to enhance the potential use of PM for Aboriginal Australians. (2) Methods: This iterative qualitative study consists of five main phases. Phase-I will ensure appropriate governance of the project and establishment of a Project Advisory Committee. Following an initial consultation with the Aboriginal community, Phase-II will invite community members to participate in co-design workshops. In Phase-III, the Chief Investigators will participate in co-design workshops and document generated ideas. The notes shall be analysed thematically in Phase-IV with Aboriginal community representatives, and the summary will be disseminated to the communities. In Phase-V, we will evaluate the co-design process and adapt our protocol for the use in partnership with other communities. (3) Discussion: This study protocol represents a crucial first step to ensure that PM research is relevant and acceptable to Aboriginal Australians. Without fair access to PM, the gap in health outcome between Aboriginal and non-Aboriginal Australians will continue to widen.

Keywords: Aboriginal and Torres Strait Islanders; Aboriginal health; Australian; co-design; genomics; participatory research; personalised medicine; precision medicine.

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Conflict of interest statement

Sandra Cooper is director of Frontier Genomics Pty Ltd. (Sydney, NSW, Australia). Frontier Genomics has not traded (as of July 2020). Frontier Genomics Pty Ltd. (Sydney, NSW, Australia) has no existing financial relationships that will benefit from publication of these data. The remaining co-authors do not have any relationships, financial or otherwise, that may result in a perceived conflict of interest.

Figures

**Figure 1**
Five Phases of the Co-design Protocol.

**Figure 2**
Five aim approach to enable Aboriginal Precision Medicine.

See this image and copyright information in PMC

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A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol

Affiliations

A Pathway to Precision Medicine for Aboriginal Australians: A Study Protocol

Authors

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Conflict of interest statement

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