The research program aims to produce world-class research in children's bioethics through the establishment of a sound evidence-base for ethical decision-making and rigorous, systematic and theory based ethical analysis. 

Specific areas of interest and activity

Specific areas of interest and activity in paediatric ethics research include:

• Clinical issues such as informed consent and end-of-life decision-making including withdrawal and withholding of treatment
• Genetics such as pre-natal screening and diagnosis, predictive genetic testing in children and young people, genetic counselling and informed decision-making
• Consent such as consent to children's participation in research, competence, opt-out consent, and children's assent
• Public Health such as vaccination, drug and alcohol service provision
• Behavioural disorders such as management of ADHD and other behavioural disorders and use of psychotropic therapies  
  

Recent publications 

Feldman, S., Gillam, L., McDougall, R. J., & Delany, C. (2026). How is clinical ethics reasoning done in practice? A review of the empirical literature. Journal of Medical Ethics, 52(1), 32–38.

Gillam, L., & Court, S. (2025). How could parents’ reasons shift a refusal of treatment into the zone of parental discretion? The American Journal of Bioethics, 25(11), 22–24.

El Ali, M., O’Neill, J., & Gillam, L. (2025). How paediatric nurses frame the ethics of non-disclosure directives. Nursing Ethics, 09697330251350383.

Storey, M., Gillam, L., Garland, F., Pang, K., & Giordano, S. (2025). The importance of early and accurate service information for young people accessing gender care. Scientific Reports, 15(1), 35282.

Adlan, A., Agich, G., Ambrogi, I., Dawson, A., van Delden, H., Frewer, A., Gillam, L., ... (2025). Interactive deliberation on WHO’s clinical ethics guidance: A critical examination of draft content and key recommendations. The Journal of Hospital Ethics, 11(2), 167–167.

Gillam, L., & Johnston, C. (2025). From conceptual to concrete: Learning ethics in a clinical ethics committee for medical students. The Journal of Hospital Ethics, 11(2), 64–64.

Gillam, L. (2025). Parents driving too much medical treatment for their child: Responding to the ethical challenges. The Journal of Hospital Ethics, 11(2), 133–133.

El Ali, M., O’Neill, J., & Gillam, L. (2025). Paediatric nurses’ personal accounts of being told not to disclose information to children with serious illness—An interpretative phenomenological study. Journal of Advanced Nursing, 81(7), 4067–4084.

Gillam, L. (2025). Traditional approaches to child and adolescent decision-making. In Deciding with Children in Pediatrics (pp. 53–65).

Wright, D., Pang, K. C., Giordano, S., & Gillam, L. (2025). Evaluating the benefits and risks of puberty blockers and gender-affirming hormones for transgender adolescents. Journal of Paediatrics and Child Health, 61(1), 7–11.

O’Neill, J., & Morley, G. (2025). Giving voice when no one is listening: The role for nurses in deciding with children. In Deciding with Children in Pediatrics (pp. 111–120).

Delany, C., Feldman, S., & Gillam, L. (2025). Advancing the scholarship of clinical ethics consultation. Journal of Medical Ethics, 51(1), 26–28.

Massie, J., Hall, G.A., & Gillam, L. (2025). Deciding with children: Putting theory into practice. In Deciding with Children in Pediatrics (pp. 173–179).

Delany, C., Feldman, S., Kameniar, B., & Gillam, L. (2025). Critical dialogue method of ethics consultation: Making clinical ethics facilitation visible and accessible. Journal of Medical Ethics, 51(1), 10–16.

Hall, G. A. (2025). Why nonidentity is not a problem: Parfitian defence of clinicians refusing to provide assisted reproductive technologies. The Journal of Medicine and Philosophy, 50(3), 168–180.

Hawley, M., O’Neill, J., Dorland, J., Richards, S., Kinney, S., Court, A., & Rayner, C. (2025). Restraint for nasogastric tube feeding in young people with anorexia nervosa or atypical anorexia nervosa: A retrospective audit. Journal of Eating Disorders, 13, 143.

Serratore, A., O’Neill, J., Jenkinson, B., Khan, A., Butler, A. E., Masterson, K., Winderlich, J., Woodgate, J., Raman, S., & Gibbons, K. S. (2025). Consumer and community involvement in paediatric intensive care research across Australia and New Zealand: A protocol for a mixed-methods environmental scan. Research Involvement and Engagement, 11(1), 82.

Chen, Y., Caudri, D., Andrinopoulou, E. R., Byrnes, C. A., Cheney, J., Cooper, P. J., ... (2025). Progression of structural lung disease and lung function in adolescents with cystic fibrosis. Journal of Cystic Fibrosis.

Massie, J., McWhinney, A., Greed, L., Robbins, N., Graham, P., Heather, N., ... (2025). Australasian guideline for the performance of sweat chloride testing (3rd ed.): To support cystic fibrosis screening, diagnosis and monitoring. Clinical Chemistry and Laboratory Medicine, 63(10), 1956–1964.

Goldman, C. M., Lewis, S., Massie, J., Kirk, E. P., Symons, A., & Delatycki, M. B. (2025). Prospective parents’ views on reproductive genetic carrier screening: “You know better, you do better”. Journal of Genetic Counseling, 34(4), e70100.

Tutty, E., McClaren, B. J., Lewis, S., Barlow Stewart, K., Boughtwood, T., ... (2025). Revising the reproductive story: Psychosocial and reproductive impacts 12 months after reproductive genetic carrier screening. European Journal of Human Genetics, 33(8), 1035–1043.

Kirk, E., Mundy, L., Lee, E., Lundie, B., Laing, N., Archibald, A. D., Newson, A. J., ... (2025). Guidelines for reproductive genetic carrier screening for cystic fibrosis, fragile X syndrome and spinal muscular atrophy. Pathology, 57(5), 539–545.

Klinner, C., Young, A., Strnadová, I., O’Neill, J., Newman, C. E., Wong, H., ... (2025). Vaccinating adolescents with intellectual and developmental disability at school: An opportunity to promote supported decision making. The Journal of School Nursing, 10598405241312981.

Hay, S., Kinney, S., Richards, S., Newall, F., Hawley, M., & O’Neill, J. (2025). Parents’ experiences of holding their child for healthcare procedures: A qualitative exploratory study. Journal of Advanced Nursing.

Hay, S., & O’Neill, J. (2025). Having a heart-to-heart: Parents’ experiences preparing their child for a cardiac procedure. Journal of Child Health Care, 13674935251321531.

Massie, J., & Feldman, S. (2025). Deciding with children: The model. In Deciding with Children in Pediatrics (pp. 67–82).

Bart, A., Hall, G. A., & Gillam, L. (2024). Gillick competence: An inadequate guide to the ethics of involving adolescents in decision-making. Journal of Medical Ethics, 50(3), 157–162.

Dentry, T., O’Neill, J., Raj, S., Gardiner, K., & Savarirayan, R. (2024). Exploring the family experience of children aged 2–4 years receiving daily vosoritide injections: A qualitative study. Journal of Pediatric Nursing.

Mills, N., Chapman, M., Sutherland, I., Gillam, L., & Collins, A. (2024). Parental perspectives on the clinician’s approach to serious illness communication: A qualitative study. Palliative & Supportive Care, 22(2), 354–359.

Hal, G., & O’Neill, J. (2024). We can't just hold 'em down anymore—Ethical challenges in adolescent consent to immunisation. The Journal of Hospital Ethics, 10(2), 138–138.

Hay, S., O'Neill, J., Kinney, S., Richards, S., Hawley, M., & Newall, F. (2024). The balancing act: Parents' experiences of procedural holding in hospital. The Journal of Hospital Ethics, 10(2), 73–73.

Oliver, M. R., Massie, J., Paraskeva, M., Majumdar, A., Gillam, L., ... (2024). Ethical challenges of multiple organ transplant in cystic fibrosis. Medical Journal of Australia.

El Ali, M., Licqurish, S., O’Neill, J., & Gillam, L. (2024). Truth-telling to the seriously ill child: Nurses’ experiences, attitudes, and beliefs. Nursing Ethics, 31(5), 930–950.

Leibowitz, R., Lewis, S., Delatycki, M., Massie, J., Emery, J., & Archibald, A. (2024). Offering reproductive genetic carrier screening for cystic fibrosis, spinal muscular atrophy and fragile X syndrome: Views of Victorian general practitioners. Australian Journal of General Practice, 53(12 Suppl), S78–S84.

Kirk, E. P., Delatycki, M. B., Archibald, A. D., Tutty, E., Caruana, J., Halliday, J. L., ... (2024). Nationwide, couple‑based genetic carrier screening. New England Journal of Medicine, 391(20), 1877–1889.

Massie, J., Hall, G.A., & Gillam, L. (2024). Deciding with children in pediatrics: Children’s participation in healthcare decision‑making. Elsevier.

Massie, J. (2024). Deciding with children: A challenging ethical ideal. The Journal of Hospital Ethics, 10(2), 105–106.

Massie, J. (2024). Is carrier screening for cystic fibrosis justified in the era of highly effective modulators? The Journal of Hospital Ethics, 10(2), 153–153.

Massie, J. (2024). Should all children with cystic fibrosis who have responsive CFTR mutations be prescribed CFTR modulators? Journal of Cystic Fibrosis, 23(4), 612–615.

El Ali, M., O’Neill, J., & Gillam, L. (2024). Paediatric nurses’ personal accounts of being told not to disclose information to children with serious illness—An interpretative phenomenological study. Journal of Advanced Nursing.

Green, D. M., Lahiri, T., Raraigh, K. S., Ruiz, F., Spano, J., Antos, N., Bonitz, L., ... (2024). Cystic fibrosis foundation evidence‑based guideline for the management of CRMS/CFSPID. Pediatrics, 153(5), e2023064657.

Vemuri, S., Hynson, J., Williams, K., O’Neill, J., & Gillam, L. (2023). Shepherding parents to prepare for end-of-life decision-making: A critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions. BMJ Open, 13(12), e075740.

Massie, J., & Barben, J. (2023). Newborn screening. In Hodson and Geddes' Cystic Fibrosis (p. 160).

Massie, J., & Barben, J. (2023). Newborn and carrier screening for CF. In Hodson and Geddes' Cystic Fibrosis (pp. 160–169).

Robbins, N., McWhinney, A., Heather, N., Massie, J., Greaves, R., Greed, L., ... (2023). Participation in sweat conductivity reporting over 10 years.

Vemuri, S., O’Neill, J., Hynson, J., Williams, K., & Gillam, L. (2023). Is simulation as an investigative method as good as reality? International Journal of Qualitative Methods, 22, 16094069231207770.

McDougall, R., Warton, C., Chew, C., Delany, C., Ko, D., & Massie, J. (2023). Visitor restrictions in hospitals during infectious disease outbreaks: An ethical approach to policy development and requests for exemptions. Bioethics, 37(7), 715–724.

Massie, J. (2023). Jumping in puddles and other goods of childhood. Archives of Disease in Childhood, 108(9), 689–690.

Jeffreys, J., Rahman, M., Vears, D., & Massie, J. (2023). Going home: Clinician perspectives on decision‑making in paediatric home mechanical ventilation. Journal of Paediatrics and Child Health, 59(3), 499–504.

Tominc, B. L., Francis, K. L., Sawyer, S. M., Heerde, J. A., O’Neill, J., & Henning, D. (2023). Immunization coverage in young people experiencing homelessness and the impact of a nurse-led program. Journal of Primary Care & Community Health, 14, 21501319231204581.

Vemuri, S., Heywood, M., O’Neill, J., Hynson, J., Williams, K., & Gillam, L. (2023). Qualitative study of paediatric advance care planning through simulation: How we did it and the lessons learned. International Journal of Qualitative Methods, 22, 16094069231193262.

Massie, J. (2023). Overcoming the burden of cystic fibrosis. Medical Journal of Australia, 218(3), 118–119.

Vemuri, S., O’Neill, J., Hynson, J., & Gillam, L. (2023). Informing simulation design: A qualitative phenomenological study of the experiences of bereaved parents and actors. Simulation in Healthcare, 18(2), 75–81.

Schulz, I., O’Neill, J., Gillam, P., & Gillam, L. (2023). The scope of ethical dilemmas in paediatric nursing: A survey of nurses from a tertiary paediatric centre in Australia. Nursing Ethics, 30(4), 526–541.

Barben, J., & Massie, J. (2023). Newborn screening for CF – The good, the bad and the ugly. Journal of Cystic Fibrosis, 22(1), 5–6.

Marks, I. R., O’Neill, J., Gillam, L., & McCarthy, M. C. (2023). Ethical challenges faced by healthcare workers in pediatric oncology care during the COVID‑19 pandemic in Australia. Pediatric Blood & Cancer, 70(2), e30114.

O’Neill, J., Devsam, B., Kinney, S., Hawley, M., Richards, S., & Newall, F. (2023). Exploring the impact of the COVID‑19 environment on nursing delivery of family‑centred care in a paediatric hospital. Journal of Advanced Nursing, 79(1), 320–331.