Genetic Counseling for Thalassemia in the Islamic Republic of Iran

• Published in: Perspectives in biology and medicine Vol. 52; no. 3; pp. 364 - 376
• Main Author: Strauss, Bernard S
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 2009
• Subjects: Blood transfusions; Cells; Chelation therapy; Cystic fibrosis; Genes; Genetic counseling; Genetic disorders; Genetic Testing; Genetics; Humans; Iran - epidemiology; Malaria; Medical technology; Minority & ethnic groups; Mutation; Risk Factors; Thalassemia - diagnosis; Thalassemia - epidemiology; Thalassemia - genetics; Iran
• ISSN: 0031-5982; 1529-8795; 1529-8795
• DOI: 10.1353/pbm.0.0093

The response of groups to pressing medical problems cannot be predicted on theoretical grounds. An example is the program for the control of beta-thalassemia in Iran, a country with a tradition of inbreeding and a conservative religious culture, and in which thalassemia is common. Thalassemia is largely treatable, but the treatment is lifelong and onerous and creates a serious economic burden for the individual family and for the national health budget. The genetics are simple, and inexpensive screening tests are available to identify carriers. An Iranian program requiring mandatory premarital screening was started in 1997, and between 1998 and 2005 the laws of the country were modified to permit abortion of affected fetuses. The story of this effort indicates how a country with a social system very different from that of the United States responded to a medical problem with significant ethical overtones. The Iranian experience supports the optimistic view that societies can react to pressing problems with pragmatic rather than theoretical solutions.