The blurred distinction between treatable and untreatable conditions in newborn screening.
Bailey, Donald B.
Health Matrix 2009 Winter; 19(1): 141-153
Newborn screening is increasingly possible for conditions that do not have medical treatments that must be provided early in order to be effective. This raises a fundamental question of what information should be disclosed to parents. Historically the potential for treatment has been essential before conditions are included in newborn screening. Here I argue that the distinction between treatable and untreatable conditions is not a clear one and may be less useful in the future. I give examples of treatments that could be used even with "untreatable" conditions, envision a possible future of newborn screening, and suggest research and policy questions that need to be answered quickly so that screening can expand in a rational fashion.
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Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues Bailey, Donald B.; Skinner, Debra; Davis, Arlene M.; Whitmarsh, Ian; Powell, Cynthia (2008-03)
Bailey, Donald B.; Skinner, Debra; Warren, Steven F. (2005-11)A fundamental tenet of newborn screening is that screening should lead to a proven benefit for the infant. The standard is usually construed as medical benefit that significantly improves a child's health. Screening for ...