Reis Elizabeth
Macaulay Honors College, CUNY, New York, USA.
Med Law Rev. 2019 Nov 1;27(4):658-674. doi: 10.1093/medlaw/fwz007.
This article argues that the rise of bioethics in the post-WWII era and the emergence of the legal doctrine of informed consent in the late 1950s should have had a greater impact on patients with intersex traits (atypical sex development) than they did, given their emphasis on respect for autonomy and beneficence toward patients. Instead, these progressive trends collided with a turn in intersex management toward infants, who were unable to provide autonomous consent about their medical care. Patient autonomy took a back seat as parents heeded physicians' advice in an environment even more hierarchical than we know today. Intersex care of both infants and adults continues to need improvement. It remains an open question whether the abstract ideals of bioethics-respect, patient autonomy, and the requirement of informed consent-are alone adequate to secure that improvement, or whether legal actions (or the threat of litigation) or some other reforms will be required to effect such change.
本文认为,鉴于二战后生物伦理学的兴起以及20世纪50年代末知情同意法律原则的出现强调尊重患者自主权和对患者的善行,它们本应对具有双性特征(非典型性发育)的患者产生比实际更大的影响。相反,这些进步趋势与双性人管理转向婴儿的情况发生了冲突,因为婴儿无法对其医疗护理给予自主同意。在一个比我们如今所知更为等级森严的环境中,当父母听从医生的建议时,患者自主权就退居次位了。婴儿和成人的双性人护理仍需改进。生物伦理学的抽象理想——尊重、患者自主权以及知情同意的要求——单凭自身是否足以确保这种改进,或者是否需要法律行动(或诉讼威胁)或其他一些改革来实现这种改变,这仍是一个悬而未决的问题。