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The Evolution of Spina Bifida Treatment Through a Biomedical Ethics Lens

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Abstract

Spina bifida is a neurodevelopmental disorder that results in a broad range of disability. Over the last few decades, there have been significant advances in diagnosis and treatment of this condition, which have raised concerns regarding how clinicians prognosticate the extent of disability, determine quality of life, and use that information to make treatment recommendations. From the selective treatment of neonates in the 1970s, to the advent of maternal–fetal surgery today, the issues that have been raised surrounding spina bifida intervention invoke principles of medical bioethics such as beneficence and nonmaleficence, while also highlighting how quality of life judgments may drive care decisions. Such changes in treatment norms are also illustrative of how disability is viewed both within the medical community and by society at large. An examination of the changes in spina bifida treatment provides a model through which to understand how ethically complex decisions regarding care for children with disabilities has evolved, and the challenges faced when medical information is combined with value-based judgments to guide medical decision making.

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Authors and Affiliations

  1. Children’s Hospital of Pittsburgh of UPMC, 4401 Penn Avenue, Pittsburgh, PA, 15224, USA

    Tal Levin-Decanini

  2. University of Pittsburgh School of Nursing, 3500 Victoria Street, Pittsburgh, PA, 15213, USA

    Tal Levin-Decanini

  3. Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, 3550 Terrace Street, Pittsburgh, PA, 15261, USA

    Amy Houtrow

  4. Division of General and Thoracic Surgery, Children’s Hospital of Pittsburgh of UPMC, 4401 Penn Avenue, Pittsburgh, PA, 15224, USA

    Aviva Katz

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  1. Tal Levin-Decanini
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Correspondence to Tal Levin-Decanini.

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Levin-Decanini, T., Houtrow, A. & Katz, A. The Evolution of Spina Bifida Treatment Through a Biomedical Ethics Lens. HEC Forum 29, 197–211 (2017). https://doi.org/10.1007/s10730-017-9327-2

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