Lethal Language, Lethal Decisions

Authors

  • TRACY K. KOOGLER,

    1. Tracy K. Koogler is an assistant professor of clinical anesthesia and critical care, Department of Anesthesia and Critical Care, and an assistant professor of clinical pediatrics in the Department of Pediatrics at the University of Chicago, Chicago, Ill.
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  • BENJAMIN S. WILFOND,

    1. Benjamin S. Wilfond is head, Bioethics Research Section, Medical Genetics Branch, National Human Genome Research Institute, and head, Genetics Section, Department of Clinical Bioethics, Warren G Magnuson Clinical Center, Bethesda, MD.
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  • LAINIE FRIEDMAN ROSS

    1. Laine Friedman Ross is an associate professor in the departments of Pediatrics and Medicine and assistant director of the MacLean Center for Clinical Medical Ethics, University of Chicago.
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Abstract

Although many of the congenital syndromes that used to be lethal no longer are, they are still routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by portraying as a medical determination what is in fact a judgment about the child's quality of life, it wrests from the parents a decision that only the parents can make.

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