Department of Theology, Boston College, Chestnut Hill, Massachusetts, USA.
Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
J Med Ethics. 2018 Jul;44(7):443-447. doi: 10.1136/medethics-2018-104902. Epub 2018 May 18.
The opinion of Mr. Justice Francis of the English High Court which denied the parents of Charlie Gard, who had been born with an extremely rare mutation of a genetic disease, the right to take their child to the United States for a proposed experimental treatment occasioned world wide attention including that of the Pope, President Trump, and the US Congress. The case raise anew a debate as old as the foundation of Western medicine on who should decide and on what standard when there is a conflict between a family and the treating physicians over a possible treatment. This paper will explore the different approaches of the British and American courts on the issue and the various proposals from that of John Rawls in his to a processed-based approach for resolving such disputes.
英国高等法院法官弗朗西斯（Francis）先生的意见否认了患有极为罕见基因突变遗传疾病的查理·加德（Charlie Gard）的父母将孩子带到美国接受拟议的实验性治疗的权利，这一意见引起了包括教皇、特朗普总统和美国国会在内的全世界的关注。该案件再次引发了一场自西方医学基础建立以来就存在的争论，即当家庭与治疗医生在可能的治疗方案上存在冲突时，应由谁来决定以及应遵循什么标准。本文将探讨英、美两国法院在该问题上的不同方法，以及从约翰·罗尔斯（John Rawls）的《正义论》到解决此类争议的基于程序的方法的各种建议。
