Beta-Thalassemia Major Births after National Screening Program in Taiwan

Abstract

Objective. A National Thalassemia Screening Program was adopted in Taiwan in 1993. This report examined that program 's results and impact. Methods . Patients with beta- thalassemia major born between 1994 and 2003 were recruited through the help of all thalassemia clinics in Taiwan. A structured questionnaire was designed to collect the reasons for affected births. Results. There were 97 affected births from 1994 to 2003. These births resulted after informed choice (n = 4), screening problems (n = 83) , and undetermined causes (n = 10). Approximately 83% (5/6) of affected births in 2003 came from interracial marriages. Conclusions. This report has identified several areas that might improve the thalassemia-screening program, including carrier screening in high school rather than in early pregnancy and the involvement of genetic counselors, providing care of new female immigrants.