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自闭症“流行”:发育谱系障碍中的伦理、法律和社会问题

The autism "epidemic": Ethical, legal, and social issues in a developmental spectrum disorder.

作者信息

Graf William D, Miller Geoffrey, Epstein Leon G, Rapin Isabelle

机构信息

From the Department of Pediatrics (W.D.G.), Division of Neurology, Connecticut Children's Medical Center and the University of Connecticut, Farmington; Department of Pediatrics (G.M.), Yale University School of Medicine, New Haven, CT; Department of Pediatrics (L.G.E.), Northwestern University's Feinberg School of Medicine, Chicago, IL; and The Saul R. Korey Department of Neurology (I.R.), The Department of Pediatrics, The Rose F. Kennedy Center for Research on Intellectual and Developmental Disabilities, Albert Einstein College of Medicine, Bronx, NY.

出版信息

Neurology. 2017 Apr 4;88(14):1371-1380. doi: 10.1212/WNL.0000000000003791. Epub 2017 Mar 8.

Abstract

Classic autism has gradually evolved into the concept of a larger "spectrum disorder." The rising prevalence of autism and autism spectrum disorder (autism/ASD) diagnoses can be largely attributed to broader diagnostic criteria, adoption of dimensional assessment strategies, increased awareness, linking of services to diagnosis, and the inclusion of milder neurodevelopmental differences bordering on normality. The spectrum disorder diagnosis raises numerous bioethical issues for individuals and society. Three groups of caregivers have important ethical, legal, and social obligations to individuals with autism/ASD: (1) families and advocates of individuals with autism/ASD; (2) health care and other professionals; and (3) governments. Each group may have different views of autism/ASD diagnostic criteria, screening, testing, and the effectiveness of various interventions. All see timely diagnosis as desirable, but earlier diagnosis may not be better, morally or practically. The growing practice of genetic testing in milder ASD raises ethical questions because of its uncertain scientific validity and limited clinical utility. Individuals with autism/ASD have various kinds of needs but all want acceptance and most deserve better accommodations. Governments struggle to provide a fair allocation of appropriate special education and supportive services. This article examines the evolving dimensions of the autism/ASD diagnosis, outlines certain bioethics principles related to its evaluation and management, reviews relevant laws and disability rights, and emphasizes the societal obligation to recognize neurodevelopmental variation and human neurodiversity. Future directions in the evaluation and care of autism/ASD should attempt to integrate the roles and responsibilities of all agents caring for each unique autistic individual.

摘要

典型自闭症已逐渐演变成一个涵盖范围更广的“谱系障碍”概念。自闭症及自闭症谱系障碍(自闭症/ASD)诊断患病率的上升,很大程度上可归因于诊断标准的拓宽、维度评估策略的采用、认知度的提高、服务与诊断的挂钩,以及纳入了一些与正常情况临界的较轻微神经发育差异。谱系障碍诊断给个人和社会带来了诸多生物伦理问题。有三类照护者对自闭症/ASD患者负有重要的伦理、法律和社会义务:(1)自闭症/ASD患者的家庭及倡导者;(2)医疗保健及其他专业人员;(3)政府。每一类群体对于自闭症/ASD的诊断标准、筛查、检测以及各种干预措施的有效性可能都有不同看法。所有人都认为及时诊断是可取的,但从道德或实际角度来看,更早诊断未必更好。在症状较轻的ASD中,基因检测的应用日益广泛,这引发了伦理问题,因为其科学有效性尚不确定,临床效用也有限。自闭症/ASD患者有各种各样的需求,但他们都希望被接纳,而且大多数都理应得到更好的照顾。政府在努力公平分配适当的特殊教育和支持性服务。本文探讨了自闭症/ASD诊断不断演变的维度,概述了与其评估和管理相关的某些生物伦理原则,回顾了相关法律和残疾权利,并强调了社会有义务认识神经发育差异和人类神经多样性。自闭症/ASD评估和照护的未来方向应尝试整合所有照顾每一位独特自闭症患者的各方的角色和责任。

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