Long - term Effects of a Community - wide Hemoglobinopathy Screening Program

We attempted to measure the benefits of a communitywide hemoglobinopathy screening program by reviewing the numbers of newborns detected to have a hemoglobinopathy, the level of utilization of prenatal diagnostic services, and the number of hemoglobinopathies diagnosed prenatally. We measured the effect of our program on 14,051 infants born over a five year period and their families. Results: The incidence of the three common hemoglobinopathies was not altered over this five year period. Only 13% of at-risk couples received prenatal diagnosis, and only 8% of affected infants were diagnosed prenatally. We conclude that our program provided at-risk women with the diagnosis of affected fetuses and the option of possible termination of pregnancy, both of which can be quantified. In addition, our program educated, counseled, and screened large numbers of individuals for hemoglobinopathies resulting in a more educated and informed community.