Cheng Yeu-Yao, Nunn Jack, Skinner John, Rambaldini Boe, Boughtwood Tiffany, Calma Tom, Brown Alex, Meldrum Cliff, Dinger Marcel E, Byrne Jennifer A, McCowen Debbie, Potter Jayden, Faires Kerry, Cooper Sandra, Gwynne Kylie
Poche Centre for Indigenous Health, The University of Sydney, Camperdown, NSW 2050, Australia.
Faculty of Medicine and Health, The University of Sydney School of Medicine, Camperdown, NSW 2050, Australia.
Methods Protoc. 2021 Jun 21;4(2):42. doi: 10.3390/mps4020042.
(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.
(1)背景:基因组精准医学(PM)利用人们的基因组数据来指导预防性和治疗性医疗保健的提供。由于来自原住民和托雷斯海峡岛民社区的基因组数据匮乏,精准医学在这些人群中的应用尚未得到充分确立。我们报告了一种新方案的开发,该方案采用共同设计方法来增强精准医学在澳大利亚原住民中的潜在应用。(2)方法:这项迭代定性研究包括五个主要阶段。第一阶段将确保项目的适当治理并成立项目咨询委员会。在与原住民社区进行初步磋商之后,第二阶段将邀请社区成员参加共同设计研讨会。在第三阶段,首席研究员将参加共同设计研讨会并记录产生的想法。这些笔记将在第四阶段与原住民社区代表进行主题分析,总结内容将传播给各社区。在第五阶段,我们将评估共同设计过程,并调整我们的方案以便与其他社区合作使用。(3)讨论:本研究方案是确保精准医学研究对澳大利亚原住民具有相关性和可接受性的关键第一步。如果无法公平获得精准医学,澳大利亚原住民和非原住民之间的健康结果差距将继续扩大。