ALIGN Data Science Workshops

11 July 2023

In June, the ALIGN data science and systems working group came together at National Computational Infrastructure (NCI) at Australian National University, Canberra to identify questions for community engagement from a data science perspective. These discussions spanned two days with the overarching goal of delivering genomics-driven health care for Indigenous people, with the need for individual and collective privacy protection, and ways to incorporate Indigenous wisdom in design and implementation of required data infrastructure for the delivery of tailored care.

Intent

The purpose of the workshop was to discuss existing practices in genomic sciences and data management and construct a list of questions to be brought to communities to begin dialogues on the management of Indigenous genomics data. The focus areas included governance, policy, processes, community engagement, internationally developed standards and developing publications to establish guidelines and transparency.

Discussions

1. Indigenous Data Sovereignty: The workshops emphasised the importance of Indigenous data sovereignty principles and the need to align data systems with these principles. Discussions revolved around adapting existing genomics security principles, such as GA4GH, to an Indigenous genomics context. The goal was to identify questions from a data perspective that need guidance and clarity from Indigenous communities that would potentially be engaging in this kind of genomics research. These questions would then be discussed through an ongoing community engagement process with the aim of working through cultural and technical challenges together.
2. Reference Data Assets and File Types: The meeting addressed the establishment of reference genomes and sharing of derived information. The discussions included consent for data usage, risk categorisation, data aggregation, and the boundaries of personal information and omics. The importance of community engagement, consent, and reciprocal learning in genomics was emphasised.
3. Workflow Sharing and Community Collaboration: The workshops explored ways to involve communities in decision-making and capability-building, including ownership of data, analyses and systems, by ongoing engagement at the broad and fine-grained levels.

Key Learnings

1. Indigenous data sovereignty principles must guide the development of data systems and related policies.
2. Reciprocity, responsibility, consent, community engagement, and two-way learning are crucial for genomics research.
3. Establishing reference data assets should involve community input and adhere to consent principles.
4. Transparent and recurrent communication, accountability, and community involvement in the research process is fundamental to building and maintaining respect, trust and reciprocity.

Next Steps

This group will now work to refine questions for the community to help them align data systems with Indigenous data sovereignty principles. The outcomes from this consultation will allow the strengthening of community guidance and approvals in decision/making processes, and the development of guidelines and workflows for data management in Indigenous genomics.