Murdoch Children’s Research Institute (MCRI) Professor Megan Munsie and her interdisciplinary team have secured $1.5 million from the Federal Government to explore how children and young people want to be involved in decisions about the use of their stem cells in research.

MCRI Stem Cell Ethics and Policy Group Leader, reNEW Melbourne Principal Investigator and PREPARE Theme Lead Professor Munsie and her team received the Medical Research Future Fund (MRFF) Stem Cell Therapies Mission grant to investigate questions of ownership, consent and governance in paediatric stem cell research, placing young people at the centre of decision‑making.

Stem cell research often relies on cells donated by children and young people during periods of hospital care. Parents or guardians typically provide consent at a single point in time, meaning children may have little say in how their cells are used as they grow older, develop their own views and transition into adult care.

Image: Dr Ros Le Gautier

MCRI and reNEW researcher Dr Ros Le Gautier, who will lead the project’s interview component, said recent policy changes highlighted the need for practical guidance.

“Changes to the NHMRC National Statement signal an important shift towards involving children and young people more actively and meaningfully in research decisions through assent,” Dr Le Gautier said. “But there is still very little guidance on what this looks like in practice.”

The three-year study will bring together researchers, clinicians, ethicists, legal experts and governance specialists to examine how young people and families want to be involved in decisions about their cells over time, and how institutions can meaningfully support that involvement.

Image: Professor Megan Munsie

“This project brings together researchers from MCRI, the University of Melbourne  alongside international scholars, investigators with lived experience and partners across patient advocacy, paediatric biobanking, education and bioethics,” Professor Munsie said.

“That breadth of expertise is essential to keeping pace with scientific advances while respecting the evolving rights, agency and expectations of young Australians.”

Working in partnership with young people, the team will co‑produce and pilot practical tools to embed children’s and families’ perspectives into the governance of stem cell research. These will include adaptable consent and, where appropriate, re‑consent templates, culturally and developmentally appropriate communication resources for clinicians, and youth‑informed recommendations to strengthen governance.

Together, these outputs will contribute to a national framework to support greater community trust, acceptance and uptake of stem cell‑based medical innovations.

Partner organisations include the Leukaemia Foundation, UsherKids Australia, Muscular Dystrophy Australia, Children’s Medical Research Institute, Gene Technology Access Centre, Praxis Australia, WA Child and Adolescent Health Service, the Australasian Biospecimen Network Association, the Australasian Research Management Society and the Novo Nordisk Foundation Center for Stem Cell Medicine (reNEW).

Funding

This research is supported by the Australian Government’s Medical Research Future Fund (MRFF) Stem Cell Therapies Mission (grant application number 2053597).