Salter Erica K
Health Care Ethics and Pediatrics, Saint Louis University, St. Louis, MO, USA.
HEC Forum. 2017 Sep;29(3):191-196. doi: 10.1007/s10730-017-9330-7.
From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child's disability. Because these decisions are almost always made by surrogate decision-makers (parents and caregivers) and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care. As the introduction to HEC Forum's special thematic issue on Childhood and Disability, this article orients the reader to the history of bioethics' relationship to both pediatric ethics and disability studies and introduces the issue's five manuscripts. As clinicians, disability scholars, philosophers and clinical ethicists writing on various aspects of pediatric disability, the articles' authors all invite readers to dig beneath an overly-simplified version of what disability might mean to children and families and instead embrace a posture of genuine humility, recognizing both the limits and harms of traditional medical and bioethical responses (or indifferences) to the disabled child.
从对严重发育障碍儿童的生长减缓治疗到13三体和18三体婴儿的产后管理，儿科治疗决策常常涉及对儿童残疾可能性和严重程度的评估。由于这些决策几乎总是由替代决策者（父母和照料者）做出，且这些决策者常常必须基于预后猜测和可能有偏差的生活质量判断来做决定，所以它们是儿科护理中伦理上最为复杂的决策之一。作为《健康与伦理论坛》关于儿童与残疾的特别专题的引言，本文引导读者了解生物伦理学与儿科伦理学及残疾研究关系的历史，并介绍该专题的五篇手稿。作为在儿科残疾各个方面进行写作的临床医生、残疾学者、哲学家和临床伦理学家，文章的作者们都邀请读者深入探究关于残疾对儿童和家庭可能意味着什么的过于简化的观点，转而秉持真正谦逊的态度，认识到传统医学和生物伦理学对残疾儿童的反应（或冷漠）的局限性和危害。
