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Beyond Consent: Ethical Considerations in Informed Permission and Assent in Pediatric Oncology
Michelle Amit1, Jennifer Brewer2, Ami V Desai3
1Comer Children's Hospital at the University of Chicago, Chicago, Illinois.
Insights
Informed consent in pediatric oncology requires careful communication between clinicians, parents, and children. Clinicians must navigate complex ethical considerations for both routine care and research participation.
Area of Science:
- Pediatric Medicine
- Bioethics
- Clinical Research
Background:
- Informed consent is a cornerstone of medical ethics.
- Pediatric patients often lack the capacity to provide informed consent due to age.
- Parental or guardian consent is typically required for minors.
Purpose of the Study:
- To explore the complexities of informed consent and assent in pediatric oncology.
- To highlight the unique challenges in communicating medical information to children and their guardians.
- To emphasize the ethical responsibilities of pediatric clinicians in this process.
Main Methods:
- This study is a review of ethical principles and clinical practices.
- It analyzes the intersection of clinical care and research in pediatric oncology.
- Focuses on communication strategies for informed consent and assent.
Main Results:
- Informed consent and assent processes are more intricate in pediatric oncology due to integrated clinical research.
- Effective communication of risks, benefits, and side effects is crucial.
- Clinicians must be sensitive to the emotional and cognitive states of parents and guardians.
Conclusions:
- Familiarity with the ethical underpinnings of consent and assent is vital for pediatric clinicians.
- Navigating these complex discussions is essential for ethical patient care and research participation.
- Ensuring comprehension and respect for patient/family autonomy is paramount.
Abstract:
Informed consent is a guiding principle underpinning medical care. In pediatrics, most patients are unable to provide consent by nature of their age and maturity, and the responsibility for providing informed permission falls to the child's parent or guardian. However, in most circumstances, the child should be involved in discussions about their medical care and sometimes can give assent to their care. In pediatric oncology, where clinical research is often enmeshed in clinical care, the processes of informed consent and assent may be even more complex. Pediatric oncology clinicians must be able to communicate the goals, potential benefits and risks, and anticipated side effects (of both routine care and involvement in research studies), while being attuned to the parents' or guardians' emotional state and understanding. While obtaining consent and assent can be complex and even challenging, familiarity with their ethical rationale is essential for pediatric clinicians.
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