The blurred distinction between treatable and untreatable conditions in newborn screening
Bailey, D. (2009). The blurred distinction between treatable and untreatable conditions in newborn screening. Health matrix (Cleveland, Ohio : 1991), 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