As a result of New York State's Newborn Screening Program 4,565 neonates with trait hemoglobinopathies were identified and 3,200 families were notified of the results of testing their infants in New York City in 1982. Of the 1,531 families (2,190 parents) tested and counseled, 22 parents were diagnosed with sickle cell disease and 39 couples were found to be at-risk for having a child with sickle cell disease. Amniocentesis was performed in 14 of the 28 at-risk pregnant women and three of the four affected pregnancies were terminated. MCH-331001-01 to 04
KIE: In 1982, under New York State's Newborn Screening Program, New York City identified 4,565 infants with trait hemoglobinopathies. Of the 3,200 families notified of the results, 1,531 (2,190 parents) were tested and counseled, resulting in 22 parents diagnosed with sickle cell disease and 39 couples found at risk for having a child with sickle cell disease. Amniocentesis was performed in 14 of the 28 at risk pregnant women and three of the four affected pregnancies were terminated. Despite the low follow-up rate, which was related to the degree of individual hospital persistence, the authors maintain that the screening provides benefits not only to newborns but also to parents with disease hemoglobinopathies and to those at risk, and that it fulfills an ethical obligation to present and future parents in their "right to know" and to be counseled.