Safeguarding Genomic Data

Approach

To address the challenges, HealthConsult undertook three distinct processes:

• Data governance review and recommendations relevant to the proposed technology design, data sharing agreements, policies, and standard operating procedures for clinical use and clinical reuse.
• Refresh the Data Governance Framework to reflect current GenoVic capabilities, future plans, and advances in genomics data governance as it applies to a third-party Data Custodian Role.
• Review of all privacy and security regulations in Australia to generate advice on issues and risks if organisations were to contribute data and use GenoVic beyond the jurisdictional boundaries of Victoria, or if data was accessed and reused for clinical purposes beyond Victoria and NSW.

Outcome

GenoVic (now part of the Genomical® a platform) has supported over 15,000 accredited genomic tests. The supporting infrastructure, software, policies, procedures and agreements were directly informed by the outcomes of this project. The project set a new standard for responsible data governance in genomics clinical use and reuse and the findings were presented at the 19th World Congress on Medical and Health Informatics.

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Client

The Melbourne Genomics Health Alliance