This chapter shows that the expansion of newborn screening has paradoxically launched some families onto diagnostic odysseys of an entirely different sort. Rather than diagnosing asymptomatic patients with clear-cut diseases, expanded newborn screening identified a distinct group of newborns with screening values lying outside a preset normal range that did not always clearly correlate with defined disease categories. We refer to these patients as patients-in-waiting because they hovered for extended periods of time under medical attention between sickness and health, or more precisely, between pathology and an undistinguished state of “normality.” A patient-in-waiting was treated as a patient in the medical encounter, but it was not always clear whether anything was wrong. The major issue facing a newborn patient-in-waiting was not only whether the baby would develop a metabolic disorder but also whether the screened condition was actually a disease.
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