Opportunities for a national genomic data governance framework in Australia: a systematic review
Our synthesis of the current literature on genomic data governance suggests that the current focus on individual consent as the primary mechanism for protecting data subjects and different priorities in clinical and research governance need to be addressed. Given the significance of the role of consent procedures and differences in clinical and research data in generating a data governance framework, our findings hence reveal a critical gap in the research literature. Advancing a national genomic data governance framework will require greater consensus and clarity regarding the application of ethical principles across jurisdictions and institutions.
Authors
- Fabian Cannizzo (ORCID: https://orcid.org/0000-0002-5159-8677)
- Miranda E. Vidgen (ORCID: https://orcid.org/0000-0003-4131-0390)
- Marco Rizzi (ORCID: https://orcid.org/0000-0003-0445-9655)
- Margaret Otlowski (ORCID: https://orcid.org/0000-0003-4707-4325)
- Alan Petersen (ORCID: https://orcid.org/0000-0002-2755-0227)
- Rebekah McWhirter (ORCID: https://orcid.org/0000-0002-9409-8074)
- Ainsley J. Newson (ORCID: https://orcid.org/0000-0002-3460-772X)
- Jasmine Hensley
Institutions
- Australian National University (AU)
- The University of Sydney (AU)
- The University of Western Australia (AU)
- QIMR Berghofer Medical Research Institute (AU)
- Tasmanian Land Conservancy (AU)
- Sydney Local Health District (AU)
- Monash University (AU)
Publication Details
- Journal
- BMC Medical Ethics
- Published
- 2025-08-14
- DOI
- https://doi.org/10.1186/s12910-025-01273-7
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00