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

Yeu-Yao Cheng; Jack Nunn; John Skinner; Boe Rambaldini; Tiffany Boughtwood; Tom Calma; Alex Brown; Cliff Meldrum; Marcel E Dinger; Jennifer A Byrne; Debbie McCowen; Jayden Potter; Kerry Faires; Sandra Cooper; Kylie Gwynne

doi:10.3390/mps4020042

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

Methods Protoc. 2021 Jun 21;4(2):42. doi: 10.3390/mps4020042.

Authors

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.

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.