With technological advances and decreases in costs, large amounts of genomic data are now being generated and stored in Australia. To tap their research potential, it is essential that these data are made accessible to researchers, including across domestic and international borders. GUARDIANS (human Genomics Uplift for Australia through Research Data Infrastructure at National Scale) aims to enable researchers to access and analyse genomic data, including across borders. Privacy protection is key in this infrastructure project. Legal privacy issues and ambiguities arise when data is shared across borders. It is necessary to address these issues to ensure that GUARDIANS infrastructure and policy is integrated with existing Australian regulation and practice, and aligned internationally.
We are examining current and intended genomic data-sharing across Australia’s borders to consider potential legal obstacles, provide legal clarity where possible, and pinpoint potential areas for reform. We are doing so in two phases: (i) stakeholder engagement to produce validated data sharing scenarios; and (ii) a scenario-based analysis of privacy law and regulation.
In this presentation, we present the outcomes of the first phase: stakeholder engagement and scenario-building, including planned data-sharing environments and data types, potential data flows and recipients, as well as stakeholder aims and concerns. Then, using these validated data-sharing scenarios, we will identify the key legal or regulatory issues in planned cross-border genomic data-sharing, including when and how privacy protections will apply under Australian privacy laws. Finally, we will offer insights towards clarifying legal obligations and liabilities, and identify potential opportunities for reform.