Our project is producing a range of outputs across all phases of our research. These include academic papers, conference posters, workshop reports, submissions to policy consultations as well as internal project reports detailing research findings. Together, they demonstrate our project’s ongoing contribution to advancing ethical and effective governance of genomic data. Be sure to check this page regularly to see our new outputs as they are published.

The research team conducts extensive and collaborative work in the field of genomic data governance, exploring the ethical, legal, and social dimensions of how genomic information is collected, stored, used, and shared. Our interdisciplinary focus enables us to examine complex questions about a wide range of concepts and issues. Our publications contribute to national and international debates on responsible genomic data governance. These outputs both generate knowledge and also inform practical policy and governance to support ethical and socially responsive genomic science.

Cannizzo, F., Vidgen, M.E., McWhirter, R. , Petersen, A., Otlowski, M., Rizzi, M., Hensley, J., Newson, A.J. Opportunities for a national genomic data governance framework in Australia: a systematic review. BMC Med Ethics 26, 111 (2025). https://doi.org/10.1186/s12910-025-01273-7

Thaldar, D., Uberoi, D., Thorogood, A., Milne, R., Newson, A.J., Hall, A., Glazer, D., Esselaar, P., Joly, Y. Communicating clearly about data sharing in genomics. Hum Genomics 19, 80 (2025). https://doi.org/10.1186/s40246-025-00784-z

Lysaght, T., Ankeny, R., Brown, A. McWhirter, R., Nicol, D., Otlowski, M., Richards, B., Newson, A.J. The Australian LINEAGE Study: advancing and implementing international guidance on genomic data within local governance frameworks. npj Genom. Med. 10, 34 (2025). https://doi.org/10.1038/s41525-025-00492-6  

Watch this space for an exciting list of posters presented at conferences by LINEAGE Study researchers.

The LINEAGE consortium contributes to the evolving field of genomic data governance by preparing and submitting submissions to national and international initiatives, frameworks, and consultations.. Through these submissions, the research team ensures that the project is represented in global discussions.

The LINEAGE Study Team. Submission: World Health Organisation’s Guidance for human genome data collection, access, use and sharing (Submitted May 2024 ).

The LINEAGE Study Team. Submission: National Health Genomics Policy Framework and Implementation Plan (Submitted July 2025).

LINEAGE investigators draft reports that document research outcomes, milestones and achievements and report on workshops. Together, they complement our peer reviewed publications to provide further information about project activities and demonstrate our team’s ongoing contribution to advancing ethical and effective governance of genomic data.