Ethical Frameworks of Informed Consent in the Age of Pediatric Precision Medicine

Ethical Frameworks of Informed Consent in the Age of Pediatric Precision Medicine
David Chen
Precision Medicine, 6 May 2024
Abstract
Precision medicine is an emergent medical paradigm that uses information technology to inform the use of targeted therapies and treatments. One of the first steps of precision medicine involves acquiring the patient’s informed consent to protect their rights to autonomous medical decision making. In pediatrics, there exists mixed recommendations and guidelines of consent related practices designed to safeguard pediatric patient interests while protecting their autonomy. Here, we provide a high-level, clinical primer of 1) ethical informed consent frameworks widely used in clinical practice and 2) promising modern adaptations to improve informed consent practices in pediatric precision medicine. Given the rapid scientific advances and adoption of precision medicine, we highlight the dual need to both consider the clinical implementation of consent in pediatric precision medicine workflows as well as build rapport with pediatric patients and their substitute decision-makers working alongside interdisciplinary health teams.

Editor’s note: The modern adaptions mentioned by the authors include having a two-step consent process, providing options for pediatric patients to exercise their right to re-consent for continued use of genomic data at the age of majority, and using broad consent strategies.