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The Love Spectrum Disorder. 爱谱障碍。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a974082
Sarah Laca
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引用次数: 0
Editors' Note. 编者注。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a974060
James M DuBois, Ana S Iltis, Heidi A Walsh
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引用次数: 0
Understanding Assumptions and the Impact on Medical Care: A Personal Story. 理解假设和对医疗保健的影响:一个个人的故事。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a979945
Patricia Dufty
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引用次数: 0
"He Is Always Lucas First": The Difference Between People and Their Diagnoses. “他总是卢卡斯第一”:人与诊断之间的差异。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a979948
Rosemarie Garland-Thomson

This commentary explores a complex issue in modern medicine, focusing on the experience of people like Lucas Warren, the first Gerber Baby with Down syndrome, along with the children of the authors in this issue of Narrative Inquiry in Bioethics (NIB). The commentary highlights a paradox: medical advancements have greatly improved opportunities for well-being and quality of life, but they have also sparked a "eugenic impulse," referring to the idea of improving society by eliminating disabilities. While prenatal testing and treatments for Down syndrome have helped improve lives, they have also led to fewer births of people with Down syndrome, thereby reducing the presence of these individuals in society. This results in the marginalization of such people, who are seen as less desirable in society due to their diagnoses. The NIB authors explore the ongoing discrimination and bias that their children and families encounter. The commentary stresses the importance of seeing children with Down syndrome as people first, not just as their diagnoses, and recognizes the deeply personal and emotional journeys of the parents as they have learned to advocate for their children's dignity and inclusion.

这篇评论探讨了现代医学中的一个复杂问题,重点关注像卢卡斯·沃伦这样的人的经历,他是第一个患有唐氏综合症的格伯婴儿,以及本期《生物伦理学叙事探究》(NIB)作者的孩子。这篇评论强调了一个悖论:医学进步极大地改善了人们获得幸福和生活质量的机会,但也引发了“优生冲动”,即通过消除残疾来改善社会的想法。虽然唐氏综合症的产前检查和治疗有助于改善生活,但它们也导致唐氏综合症患者的出生减少,从而减少了这些人在社会中的存在。这导致这些人被边缘化,由于他们的诊断,他们在社会上被视为不那么受欢迎。NIB的作者探讨了他们的孩子和家庭所遭遇的持续歧视和偏见。评论强调,首先要把患有唐氏综合症的儿童视为人,而不仅仅是他们的诊断,并认识到父母在学会倡导孩子的尊严和包容的过程中所经历的深刻的个人和情感旅程。
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引用次数: 0
Breath & Resilience: Raising a Child with Down Syndrome. 呼吸和恢复力:养育患有唐氏综合症的孩子。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a979938
A Nicole White
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引用次数: 0
Multiple Selves. The Story. 多个自我。这个故事。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a974069
Anya Ovcharenko
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引用次数: 0
When Autism and Psychosis Intersect with Domestic Violence and Therapy Harm. 当自闭症和精神病与家庭暴力和治疗伤害相交。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a974068
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引用次数: 0
Autistically Gendered. Autistically性别。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a974070
Betsy Selvam
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引用次数: 0
"He Is": Where Love, Joy, and Sorrow Meet. 《他在》:爱、欢乐和悲伤相遇的地方。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a979957
Gloria Hsu
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引用次数: 0
Refused to Work: School, Normative Time, and the Paradox of Inclusion. 拒绝工作:学校、规范时间和包容的悖论。
Q4 Medicine Pub Date : 2025-01-01 DOI: 10.1353/nib.2025.a979944
Thomas W Pearson
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引用次数: 0
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Narrative inquiry in bioethics
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