Division of Hematology-Oncology, Department of Pediatrics, Vanderbilt University Medical Center, 2220 Pierce Avenue 397 PRB, Nashville, TN, 37232-6310, USA.
Division of Pediatric Hematology/Oncology, Harvard Medical School, Center for Bioethics, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA, 02215, USA.
Recent Results Cancer Res. 2021;218:149-173. doi: 10.1007/978-3-030-63749-1_11.
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.
儿科癌症患者的护理与成人癌症护理有很大的不同。虽然可用的治疗方法——化疗、放疗和手术——是相同的，但疾病、护理提供和结果却有很大的不同。正如“儿童不仅仅是小大人”一样，儿科生物伦理学在更广泛的生物伦理学领域中占据着独特的地位。在本章中，我们将首先介绍理解儿科伦理问题的基本原则和框架，强调医生、患儿和患儿的父母作为替代决策者之间的三方医学决策性质。然后，我们将深入探讨这些原则和框架如何塑造对癌症患儿的护理，检查儿科肿瘤学家通常遇到的具体伦理挑战。我们将通过研究涉及（a）知情同意；（b）涉及儿童的研究；（c）生命末期；（d）遗传和基因组测试；和（e）专业性的问题来探讨这个领域。我们还研究了儿童和更广泛范围内临床研究中的伦理挑战。虽然这不是对儿科癌症医学和临床试验中可能遇到的无数伦理问题的详尽探讨，但本章为读者提供了进一步阅读的基础。
