Phenomics Australia is proud to partner in a nationally significant initiative that has secured funding through the Medical Research Future Fund (MRFF) National Critical Research Infrastructure grant to strengthen the ethical governance and long-term value of Australia’s human stem cell resources.
Led by Phenomics Australia Scientific Director, Professor Christine Wells, Chair of Stem Cell Systems in the Department of Anatomy and Physiology, Faculty of Medicine, Dentistry and Health Sciences at the University of Melbourne, the consortium has been awarded $2,975,024 for the Registration and Ethical Governance of Australian Stem Cell Lines project.
The initiative will develop the digital infrastructure needed to enable trustworthy, responsible and donor-guided governance of human stem cell biospecimens. The interdisciplinary team includes Dr Noel Faux and Ms Alison McIvor (University of Melbourne), Professor Joan Leach and Associate Professor Rebekah McWhirter (Australian National University), Emeritus Professor Susan Dodds (La Trobe University), Emeritus Professor Dianne Nicol (University of Tasmania), and Professor Rachel Ankeny (Wageningen University).
The interdisciplinary team will pilot new mechanisms for governance and review of consent in the Australian stem cell registry.
For Phenomics Australia, ensuring the ethical use of individual stem cell lines is fundamental to delivering meaningful translation of stem cell research into improved health outcomes.
Robust governance, transparent consent processes and ongoing engagement with donors are essential to maintaining public trust while enabling researchers to maximise the scientific and clinical value of these unique resources.
The importance of this approach is reflected in the perspectives of donors themselves. As Heather Renton, parent of a child with a rare genetic condition, explains:
“I suspect many families like ours had samples taken prior to genomic sequencing becoming more mainstream. And probably most would have forgotten years later that they have samples stored at the research institute/hospital where it was done. And we would not be able to track down any samples that left Australia.”
Projects such as this recognise that ethical stewardship is not simply a regulatory requirement, it is critical research infrastructure. By ensuring that stem cell lines continue to be used in ways that respect donor wishes, Australia can accelerate discovery while maintaining the confidence of the individuals and families whose participation makes this research possible.
Through its partnership in the project, Phenomics Australia will help deliver national infrastructure that supports responsible access to stem cell resources and strengthens long-term partnerships between researchers and the Australian donors who contribute to and ultimately benefit from stem cell research. Together with the Garvan Institute’s CTRL platform, the project will establish sustainable systems that underpin ethical, collaborative and impactful stem cell research across Australia.
The total value of the project is estimated at $4,900,985.
