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  

Ghinea, N., Xin, W., Samuel, G. Lucassen, A., Newson, A.J. Environmental considerations in human genomic data governance: overcoming normative challenges. BMC Med Ethics (2026). https://doi.org/10.1186/s12910-026-01417-3

Researchers from the LINEAGE Study regularly present posters at national and international workshops, conferences and symposia. These posters showcase emerging findings, conceptual developments, and ongoing work across the project’s diverse research streams in genomic data governance.

Our poster presentations provide a snapshot of current research activity within LINEAGE, highlighting interdisciplinary insights spanning bioethics, law, social science, medicine and policy. They also reflect our commitment to active engagement with academic, clinical, policy and community audiences, fostering dialogue and collaboration at every stage of the project.

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.

Cannizzo, F., Petersen, A., McWhirter, R., Luo, Y., Newett, L., Croy, S., and Richards, C. (2025, September) Genomic Data Custodianship Practices in Australia: An Interview Study Report, Melbourne: Monash University. https://doi.org/10.26180/30811817