New reports provide insights into what's needed for better sharing of human genomics research data in Australia

The HGPP will enhance capability for securely and responsibly sharing human genomics research data to maximise the utility of these sensitive and valuable assets.

Insights from the Human Genomes Platform Project (HGPP) knowledge discovery phase have recently been published online. This will ensure that knowledge is shared with others who will follow on the complicated path of sharing human genomics research data. Updates will be shared publicly throughout the life of the project, and the most recent reports detail the project’s Discovery Phase.

Representing many of the largest human genome sequencing and analysis efforts in Australia, the HGPP team is working with global peers to learn from other initiatives with similar ambitions to share sensitive research data. Consulting GA4GH and ELIXIR’s standards to better understand the international contexts, the project has described Australia’s own unique requirements. 

At the heart of any technology platform is Identity and Access Management (IAM): a collection of standards, policies and technologies that enable a platform to determine whether to permit access to a user. In a federated environment IAM is the glue that enables loosely coupled systems to establish strong trust relationships for the purposes of data sharing. Trust relies on technologies such as cryptography but also on coordinated policies outlining shared expectations between federation participants.

The initial focus of the Federated IAM sub-project team was a discovery and recording phase to define the current state of identity and access management in the community, the set of problems that need to be addressed, and key stakeholders and their (likely) requirements. To learn more about the current state of processes and tools for identity and access management across the community, national community needs, gap analysis, and identification of international projects with components suitable to canvas and potentially pilot, read the Human Genomes Platform Project: Federated Identity and Access Management (IAM) Discovery Phase Report.

A major challenge for human genome data sharing is navigating restrictions on secondary use. Decisions on granting access to data require significant effort by Data Access Committees (DAC). This manual approach is slow and burdensome. The aims of the DAC Automation sub-project are to explore semi-automated data access request and approval processes for the national human genome research community. For an Australian genomics federation to be successful, widespread adoption of new processes and systems will be needed. To learn more about the current state of relevant processes and tools, national community needs, gap analysis, and identification of international projects with potential solution components for piloting in later project stages, read the Human Genomes Platform Project: DAC Automation Discovery Phase Report.

The Human Genomes Platform Project is a partnership between Australian Access Federation, Australian BioCommons, Australian Genomics, Garvan Institute of Medical Research, National Computational Infrastructure, QIMR Berghofer Medical Research Institute, University of Melbourne Centre for Cancer Research and Zero Childhood Cancer. The project forms part of the Australian BioCommons’ Human Genome Informatics  theme and is funded through NCRIS via the Australian Research Data Commons (https://doi.org/10.47486/PL032) and Bioplatforms Australia.