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伦理与间性患者的管理:一条中间道路。

Ethics and the management of the patient with intersex: a middle way.

作者信息

Daaboul J, Frader J

机构信息

Division of Pediatric Endocrinology, Children 's Hospital of Oakland, CA, USA.

出版信息

J Pediatr Endocrinol Metab. 2001 Nov-Dec;14(9):1575-83. doi: 10.1515/jpem.2001.14.9.1575.

Abstract

We review the controversies surrounding the management of patients born with ambiguous genitalia to determine the strengths and weaknesses of recommendations for clinical practice. Traditional practice involves paternalistic decision making by medical practitioners, including the use of deception and/or incomplete communication of facts about the infant's condition and early surgical intervention to make a "definitive" sex and gender assignment. However, modern scientific evidence about sex-role determination refutes earlier theories supporting the appropriateness and need for early decisions. Some intersex individuals have begun to speak out against their treatment, denouncing the secretive approaches and cosmetic surgery without the specific consent of the (mature) affected individuals. They argue for complete disclosure of information regarding the condition and deferral of all surgery until at least adolescence. The traditionalist practices no longer conform to modern legal or ethical standards of care. The position of some intersex activists ignores the potential for psychosocial harm to intersex children and our society's general and strong deference to parental discretion in decisions for and about their children. We argue for a middle way, involving shared decision making with parents of children with intersex and the honoring of parental preferences for or against surgery.

摘要

我们回顾了围绕两性生殖器模糊患儿管理的争议,以确定临床实践建议的优缺点。传统做法包括医生家长式的决策,包括使用欺骗手段和/或对婴儿病情的事实进行不完整的告知,以及早期手术干预以做出“确定性”的性别分配。然而,关于性别角色确定的现代科学证据驳斥了早期支持早期决策的适当性和必要性的理论。一些双性人开始公开反对他们所接受的治疗,谴责这种秘密的做法以及未经(成年)受影响个体明确同意的整容手术。他们主张全面披露病情信息,并将所有手术推迟到至少青春期。传统主义者的做法已不再符合现代法律或道德护理标准。一些双性人权益活动家的立场忽视了双性儿童遭受心理社会伤害的可能性,以及我们社会普遍且强烈尊重父母对其子女决策的自主权。我们主张采取一种折中的办法,即与双性儿童的父母共同决策,并尊重父母对手术的支持或反对态度。

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