A Communication and Decision-Making Framework for Pediatric Precision Medicine.

Area of Science:

• Genomic Medicine
• Pediatric Oncology
• Bioethics

Background:

• Genomic testing is standard in pediatric cancer care and expanding to other conditions.
• Pediatricians lack clear guidance on communicating complex genomic information and engaging parents in precision medicine decisions.
• Informed consent and shared decision-making models are crucial for genomic testing in pediatrics.

Purpose of the Study:

• To propose a conceptual framework for communication and decision-making regarding genomic testing in pediatric patients.
• To guide clinicians in supporting parents through informed, goal-concordant decisions in precision medicine.
• To address the growing use of genomics in pediatric research and clinical care.

Main Methods:

• Utilized empirical work in pediatric informed consent.
• Applied existing models of shared decision-making.
• Developed a case study using pediatric precision cancer medicine.

Main Results:

• Proposed a framework based on identifying genomic test type, role, and implications.
• The framework informs information scope and parental involvement in decision-making.
• It supports a continuum of shared decision-making, from clinician-guided to parent-guided.

Conclusions:

• The proposed framework integrates standard decision-making practices with unique aspects of genomic testing.
• It aims to enhance clinician support for pediatric patients and parents navigating precision medicine.
• Effective communication and decision-making are vital for informed, goal-concordant pediatric care trajectories.