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Congratulations to reNEW Melbourne Principal Investigator, PREPARE Theme Lead and head of the MCRI Stem Cell Ethics and Policy group Professor Megan Munsie, and her interdisciplinary team, on securing an AUD$1.5 million grant from the Australian Government’s Medical Research Future Fund (MRFF) Stem Cell Therapies Mission to address a critical question in paediatric stem cell research: Who owns my cells – and what say do I have?
Stem cell research often relies on cells donated by children and young people during periods of hospital care. Consent is typically provided by parents or guardians at that single point in time, meaning young people themselves may have little involvement in decisions about how their cells may be used – even as they grow older, develop their own views and values, and transition into adult care.
Dr Roslyn Le Gautier from PREPARE and MCRI Stem Cell Ethics & Policy Group, who will lead the interview component of the project, noted “Recent 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. But there is still very little guidance on what this looks like in practice”.
Looking at addressing this gap, the three-year project, led by Professor Munsie, will place young people at the centre of the conversation. Working with an interdisciplinary team spanning research, clinical care, ethics, law and governance, the study will explore how young people and families want to be involved in decisions about their cells overtime, and how researchers and institutions can meaningfully support that involvement in practice.
“This project brings researchers from MCRI, University of Melbourne and Deakin University, with international scholars, investigators with lived experience and colleagues from across Australian patient advocacy, paediatric biobanking, education and bioethics sectors,” said Professor Munsie. “That breadth of expertise is essential to ensuring our approach keeps pace with scientific advances, while respecting the evolving rights, agency and expectations of young Australians.”
Together with young people, the team will co-produce and pilot a suite of practical tools and guidance that embed the perspectives of young people and their families into the governance of stem cell research. These will include adaptable consent and, where appropriate, re-consent templates, culturally and developmentally tailored communication resources for clinicians, and youth-informed recommendations to strengthen governance. Combined, these outputs will contribute to a robust national framework and support greater community trust, acceptance, and adoption of stem cell-based medical innovations.
Partnering organisations include: Leukaemia Foundation, UsherKids Australia, Muscular Dystrophy Australia, Children’s Medical Research Institute, Gene Technology Access Centre, Praxis Australia, WA Child and Adolescent Health Service, Australasian Biospecimen Network Association, Australasian Research Management Society and Novo Nordisk Foundation Center for Stem Cell Medicine.
