OurDNA Browser Population Genetic Data Sharing: Multicultural Community Consultation Report
Creators
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1.
Murdoch Children's Research Institute
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2.
Garvan Institute of Medical Research
Description
This report documents the consultation process conducted by the Centre for Population Genomics (CPG) with the OurDNA Multicultural Consultation Group regarding the OurDNA Browser, a publicly accessible database of genetic variation. The OurDNA program aims to address the underrepresentation of Australian multicultural communities in genomics datasets to facilitate more equitable access to the benefits of genomic medicine.
Between February and April 2025, CPG held three consultation meetings with health advocates within multicultural communities, including representatives from East African, Middle Eastern and North African, Oceanian, and Southeast Asian communities, which CPG is prioritising due to the lack of genomic reference data.
The consultation focused on the implementation of the OurDNA Browser, one of the OurDNA resources, which will share summary genetic variation data from healthy individuals to support clinical diagnosis and research. Key themes emerging from the consultation included: data security and privacy (including AI-related concerns), browser longevity and change management, safeguards against data misuse, ancestry data categorisation approaches, and effective community communication strategies. The consultation group also addressed CPG's planned participation in federated gnomAD, an international genomic data sharing initiative.
Based on the consultation group's feedback, CPG has committed to implementing additional safeguards and improvements across the themes raised.
Files
OurDNA Browser Population Genetic Data Sharing - Multicultural Community Consultation Report.pdf
Files
(5.5 MB)
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Additional details
Dates
- Created
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2025-08