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Ethical frameworks of informed consent in the age of pediatric precision medicine
David Chen1,2
1Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Insights
In pediatric precision medicine, ethical informed consent is crucial for patient autonomy. This primer reviews current frameworks and modern adaptations to improve consent processes for children.
Area of Science:
- Biomedical Ethics
- Pediatric Precision Medicine
- Health Law and Policy
Background:
- Precision medicine utilizes patient-specific data for targeted therapies.
- Informed consent is a cornerstone of patient autonomy in medical decision-making.
- Pediatric consent practices face challenges due to evolving guidelines and patient vulnerability.
Purpose of the Study:
- To provide a clinical primer on ethical informed consent frameworks in pediatrics.
- To explore modern adaptations for improving informed consent in pediatric precision medicine.
- To address the implementation of consent in pediatric precision medicine workflows.
Main Methods:
- Review of established ethical informed consent frameworks.
- Analysis of current guidelines for pediatric consent.
- Discussion of emerging adaptations for precision medicine contexts.
Main Results:
- Existing frameworks require adaptation for pediatric precision medicine.
- Modern approaches emphasize enhanced communication and patient engagement.
- Interdisciplinary collaboration is key for effective consent processes.
Conclusions:
- Optimizing informed consent in pediatric precision medicine necessitates updated ethical frameworks.
- Building trust and rapport with pediatric patients and families is essential.
- Clinical implementation requires integration with interdisciplinary health teams.
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.
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