Attitude of Saudi families affected with hemoglobinopathies towards prenatal screening and abortion and the influence of religious ruling (Fatwa)

Hemoglobinopathies are common inherited disorders in Saudi Arabia. Prenatal diagnosis for such diseases is specific and sensitive but not yet implemented in Saudi Arabia. Saudis are Muslims with a very high rate of consanguinity and inherited genetic disorders. To examine the attitude of Saudi families affected with hemoglobinopathies towards prenatal diagnosis and abortion, and to evaluate the effect of education on religious ruling on such attitudes, 32 families were interviewed using a pre-structured questionnaire. The majority accepted prenatal diagnosis (81.3%). The attitude towards abortion was greatly affected by religious values. Education about religious ruling significantly affected parents' attitude towards accepting abortion and prenatal diagnosis. No other factors were found to influence the outcome. Although the majority of families received some kind of formal genetic counseling [23/32 (71.9%)], none of them was informed about the possibility of prenatal or preimplantation diagnosis prior to the interview. Therefore for prevention of genetic disorders, the emphasis in countries with a vast majority of Muslims such as Saudi Arabia has probably to be placed on public awareness about genetic risks, the risk of consanguinity, availability of services, and so on, while at the same time taking into consideration the religious beliefs and education of the target population Copyright © 2001 John Wiley & Sons, Ltd.     

International perspectives on the implementation of reproductive carrier screening

Reproductive carrier screening started in some countries in the 1970s for hemoglobinopathies and Tay-Sachs disease. Cystic fibrosis carrier screening became possible in the late 1980s and with technical advances, screening of an ever increasing number of genes has become possible. The goal of carrier screening is to inform people about their risk of having children with autosomal recessive and X-linked recessive disorders, to allow for informed decision making about reproductive options. The consequence may be a decrease in the birth prevalence of these conditions, which has occurred in several countries for some conditions. Different programs target different groups (high school, premarital, couples before conception, couples attending fertility clinics, and pregnant women) as does the governance structure (public health initiative and user pays). Ancestry-based offers of screening are being replaced by expanded carrier screening panels with multiple genes that is independent of ancestry. This review describes screening in Australia, Cyprus, Israel, Italy, Malaysia, the Netherlands, Saudi Arabia, the United Kingdom, and the United States. It provides an insight into the enormous variability in how reproductive carrier screening is offered across the globe. This largely relates to geographical variation in carrier frequencies of genetic conditions and local health care, financial, cultural, and religious factors.