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Ethical Challenges in Pediatric Oncology Care and Clinical Trials
Daniel J Benedetti1, Jonathan M Marron2
1Division of Hematology-Oncology, Department of Pediatrics, Vanderbilt University Medical Center, 2220 Pierce Avenue 397 PRB, Nashville, TN, 37232-6310, USA. daniel.benedetti@vumc.org.
Insights
Pediatric cancer care presents unique ethical challenges distinct from adult oncology. This chapter explores informed consent, research ethics, end-of-life care, and genetic testing in children with cancer.
Area of Science:
- Pediatric Oncology
- Bioethics
- Medical Ethics
Background:
- Pediatric cancer care significantly differs from adult cancer care in disease presentation, treatment delivery, and outcomes.
- Children are not simply small adults, necessitating a specialized approach to bioethics within pediatric oncology.
Purpose of the Study:
- To introduce fundamental principles and frameworks for understanding ethical issues in pediatric cancer care.
- To examine specific ethical challenges encountered by pediatric oncologists and inform readers with a foundational understanding.
Main Methods:
- The chapter outlines the triadic nature of medical decision-making involving the physician, child-patient, and parent as surrogate.
- It explores key ethical issues including informed consent, research involving children, end-of-life care, genetic/genomic testing, and professionalism.
Main Results:
- Ethical considerations in pediatric cancer care are multifaceted and require specialized attention.
- Key areas of ethical concern include informed consent, pediatric research ethics, end-of-life decisions, and genetic testing.
Conclusions:
- Pediatric bioethics is a distinct field crucial for addressing the unique ethical dilemmas in childhood cancer care.
- Understanding these ethical principles provides a foundation for navigating complex situations in pediatric oncology and clinical research.
Abstract:
The care of pediatric cancer patients is a vast departure from cancer care of adults. While the available treatment modalities-chemotherapy, radiation, and surgery-are the same, the diseases, care-delivery, and outcomes differ greatly. And just as 'children are not just little adults,' pediatric bioethics occupies a distinct place within the broader field of bioethics. In this chapter, we will begin with an introduction to fundamental principles and frameworks for understanding ethical issues in pediatrics, highlighting the triadic nature of medical decision-making between a physician, the child-patient, and the child's parent as the surrogate decision-maker. We will then delve into further details of how these principles and frameworks shape the care of children with cancer, examining specific ethical challenges commonly encountered by pediatric oncologists. We will traverse this landscape by examining issues involving (a) informed consent; (b) research involving children; (c) end of life; (d) genetic and genomic testing; and (e) professionalism. We also examine ethical challenges in clinical research, in children and more broadly. While not an exhaustive exploration of the myriad ethical issues one might encounter in pediatric cancer medicine and clinical trials, this chapter provides readers with a foundation for further reading.
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