Kirkpatrick James N, Kaufman Beth
World J Pediatr Congenit Heart Surg. 2013 Jan;4(1):7-9. doi: 10.1177/2150135112454666.
Congenital heart disease (CHD) affects 1% of infants worldwide, and approximately 90% of children with serious CHD who have access to surgery survive to adulthood. Particularly as this population ages, there are unique ethical and policy challenges pertaining to this diverse population of children and adults, which also serve as a paradigm for other chronic diseases. A unique forum to discuss these issues occurred at the University of Pennsylvania in Philadelphia on March 16 to 17, 2012, and was entitled "Ethics of the Heart: Ethical and Policy Challenges in Adult and Pediatric Congenital Heart Disease." The conference convened a multidisciplinary panel of nationally known experts in the fields of Pediatric Congenital Heart Disease, Adult Congenital Heart Disease, and Bioethics to identify and discuss the most important ethical issues in CHD through talks, panel discussions, and one-on-one interviews in six topic areas: genetic testing, transitions of care from pediatric to adult CHD, transplantation and mechanical circulatory support, research and development in CHD, the social and personal costs of success in treating CHD, and end-of-life considerations. This article is an introduction to the topics discussed.
先天性心脏病（CHD）影响着全球1%的婴儿，在有条件接受手术治疗的严重先天性心脏病患儿中，约90%能存活至成年。特别是随着这一群体的老龄化，对于这群不同年龄段的儿童和成人，出现了独特的伦理和政策挑战，这也为其他慢性病提供了范例。2012年3月16日至17日，在费城的宾夕法尼亚大学举行了一个讨论这些问题的独特论坛，主题为“心脏伦理学：成人及小儿先天性心脏病的伦理与政策挑战”。会议召集了小儿先天性心脏病、成人先天性心脏病和生物伦理学领域全国知名专家组成的多学科小组，通过演讲、小组讨论以及在六个主题领域进行的一对一访谈，来识别和讨论先天性心脏病中最重要的伦理问题：基因检测、从小儿先天性心脏病到成人先天性心脏病的护理过渡、移植和机械循环支持、先天性心脏病的研究与开发、成功治疗先天性心脏病的社会和个人成本以及临终关怀考量。本文是对所讨论主题的介绍。
