Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

IF 0.8 4区 医学 Q2 HISTORY & PHILOSOPHY OF SCIENCE Perspectives in Biology and Medicine Pub Date : 2024-01-01 DOI:10.1353/pbm.2024.a929022
Lainie Friedman Ross, Ana S Iltis
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Abstract

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

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有兄弟姐妹家庭中儿童的医疗决策:父母的自由裁量权及其限制。
本文探讨了当一个孩子的健康决定可能会对其兄弟姐妹的健康利益或其他利益产生负面影响时,父母应如何为其做出健康决定。作者讨论了亚历克斯-琼斯(Alex Jones)的父母在八年时间里做出的三个健康决定,亚历克斯-琼斯是一名发育障碍儿童,有两个神经正常的哥哥姐姐。首先,亚历克斯的父母必须决定是否对他的兄弟姐妹进行测序,以帮助确定亚历克斯的发育障碍是否存在遗传原因。其次,亚历克斯的父母必须决定是否搬到另一个城市,以便为亚历克斯提供尽可能多的治疗选择。第三,艾利克斯的父母必须决定是否授权从艾利克斯身上采集干细胞,用于为患白血病的兄弟姐妹进行骨髓移植。我们研究了萨尔特及其同事(2023 年)关于儿科决策的共识建议是否适用于有一个以上孩子的家庭。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Perspectives in Biology and Medicine
Perspectives in Biology and Medicine 医学-科学史与科学哲学
CiteScore
1.40
自引率
20.00%
发文量
42
审稿时长
>12 weeks
期刊介绍: Perspectives in Biology and Medicine, an interdisciplinary scholarly journal whose readers include biologists, physicians, students, and scholars, publishes essays that place important biological or medical subjects in broader scientific, social, or humanistic contexts. These essays span a wide range of subjects, from biomedical topics such as neurobiology, genetics, and evolution, to topics in ethics, history, philosophy, and medical education and practice. The editors encourage an informal style that has literary merit and that preserves the warmth, excitement, and color of the biological and medical sciences.
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