Parental Receptivity to Neonatal Sickle Trait Identification

The demonstration that penicillin prophylaxis and early entry into programs of comprehensive care can reduce morbidity and mortality from infection has precipitated widespread discussion of the desirability of neonatal screening for sickle hemoglobin. However, the blood test that detects sickle cell disease also detects carriers of sickle cell disease and other abnormal hemoglobins. Is informing parents that their newborn has sickle trait beneficial? The possible benefits of sickle trait identification at birth are twofold. The first is the education of the child of the significance of sickle trait when older. However, the time lapse makes its realization uncertain. The second is the identification of reproducing couples at risk for having a child with sickle cell disease. We have attempted to evaluate this second possible benefit. Its realization requires determining which newborns (about one in 12) have both parents as hemoglobinopathy carriers. METHODS In Rochester, NY, we are conducting a hemoglobin screening program to study the benefits and burdens of carrier identification. Although our primary focus has been detection during pregnancy, we have collected some data concerning the consequences of newborn detection. My office is specifically charged by the New York State Health Department to notify parents of newborns with sickle trait in the nine-county area surrounding Rochester. The mothers of newborns with sickle trait were seen for this reason between August 1983 and February 1987. The demographic data were collected from the whole group. The knowledge data (Table) were collected from an unselected subset of 30 of these mothers.