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反对小儿两性畸形手术的理由:与耶和华见证人拒输血的类比/不类比。

Arguments for a ban on pediatric intersex surgery: A dis/analogy with Jehovah witness blood transfusion.

机构信息

Program in Gender and Sexuality Studies, Princeton University, Princeton, New Jersey, USA.

出版信息

Bioethics. 2024 Jun;38(5):460-468. doi: 10.1111/bioe.13280. Epub 2024 Mar 12.

Abstract

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of values strongly held, identity, and relationship-shaping values-such as religious beliefs or beliefs regarding the inherent value of binary sex/gender-amidst ethical pluralism. Furthermore, it takes seriously-as we must in the intersex case-that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case-and should in the case of pediatric intersex surgery-to secure patient's future autonomy.

摘要

本文主张禁止对患有两性畸形的婴儿进行非医学必要的生殖器正常化手术,以赋予其二元性别/性别,理由是基于自主选择,而不论病因如何。这是通过与经典的生物伦理案例进行类比得出的,即耶和华见证会(JW)父母无法拒绝为未成年子女提供救命输血。这两个案例都涉及到在父母基于强烈持有的价值观、身份和塑造关系的价值观(如宗教信仰或对二元性别/性别的固有价值的信仰)做出不可逆转的医疗决策的情况下,存在伦理多元化的情况下进行的道德医疗实践。此外,我们必须认真对待两性畸形病例中的情况,即限制父母的选择权可能会对大量潜在患者、他们的家庭和更大的社区造成严重伤害。我反驳了这样一种观点,即基于伤害原则或不伤害义务,父母的选择权在 JW 案例中受到限制,因为父母的选择结果将是死亡。我提供了证据表明,这是错误的,因为我们在 JW 案例中以及在临床医生有道德义务限制非未成年患者自主权的案例中,对待认知不确定性的方式是不同的。我得出的结论是,我们限制了 JW 案例中父母的选择权——并且应该在儿科两性畸形手术的情况下——以确保患者未来的自主权。

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