Review of Genetics and Genomics Data Security Provisions for the Department of Health and Aged Care
Karabena Consulting was subcontracted by Ernst & Young, who was retained by the Commonwealth Department of Health and Aged Care
Who funded the project
Karabena Consulting was engaged to undertake workshops on Indigenous Data Sovereignty in preparation for stakeholder consultations. This involved identifying First Nations stakeholders and other experts on Indigenous Data Sovereignty and providing quality feedback on the recommendations in relation to Indigenous Data Sovereignty as it pertained to the project.
Summary
The project aims were:
To provide advice in relation to considerations about Indigenous populations genomics and genetic testing as part of the review.
To review the Situational Analysis Report and Final Report relating to stakeholder input on Indigenous Data Sovereignty and the recommendations pertaining to Indigenous Data Sovereignty.
Project Aims
Stakeholder identification
Consultation meetings with identified stakeholders
Drafting of content for Situational Analysis Report
Presentation to the Department of Health and Aged Care Representatives
Analysis of the Final Report
Methodologies
Stakeholders identified through the ALIGN Network
Presentations made and informed the development of Genetics and Genomics Data Security Provisions for the Department of Health and Aged Care.
Methodological outcomes
Support for the work of the genetic futures initiative. For more information see: https://www.health.gov.au/our-work/genomics-health-futures-mission
Project Outputs
#genetics #genomics #datasecurity #datasovereignty #Indigenousknowledge #privacy #protection #rights