The mission of the Working Group on Pediatric Gene Therapy and Medical Ethics (PGTME) is to advance research, policy, and education regarding ethical issues in the development and use of pediatric genetic interventions. We seek to promote improved understanding of ethical challenges and nascent best practices for clinical research and practice in pediatric populations across the evolving landscape of genetic technologies. We do this by investigating and sharing publicly our finding about such topics as trial design, patient autonomy and surrogate decision-making, the patient and family lived experience, and fairness in access to novel genetic interventions.

PGTME formed in 2019 and is housed in the Division of Medical Ethics at NYU Grossman School of Medicine. The group's multidisciplinary membership enables comprehensive consideration of issues related to the development and use of pediatric genetic interventions.

Please see our annual report and contributions to peer-reviewed and other reputable publications and media outlets, and learn more about our Lived Experiences Subgroup.

Our Members

We leverage input from stakeholder communities and our members—experts from the fields of bioethics, clinical trial design, industry, law, medicine, and patient advocacy.

Our group is funded by a gift from Parent Project Muscular Dystrophy.

Contact Us

For general inquiries, or to join our mailing list for quarterly updates, please contact Cara Hunt at Cara.Hunt@NYULangone.org.