Premarital Screening and Genetic Counseling Program, Sickle Cell Anemia and Thalassemia in Saudi Arabia

Abstract

Introduction: Sickle cell disease and thalassemia are common hemoglobinopathies among Saudis as consanguineous marriages make up 42-67 % of all marriages in Saudi Arabia. In an attempt to decrease the high number of haemoglobinopathies in Saudi Arabia, the country’s Ministry of Health introduced the mandatory premarital screening and genetic counseling (PMSGC) in 2004. The process of PMSGC is characterized as the testing of couples who plan to marry for common genetic blood disorders.

Methods: This descriptive study drew on the national data of the Saudi PMSGC Program and its aim was an assessment of how the people using the governmental outpatient clinics felt concerning the Saudi PMSGC and to investigate the outcomes of mandatory Saudi PMSGC for couples with compatible hemoglobinopathies, namely sickle cell anemia and thalassemia, in terms of (diseased or carrier, compliant or non-compliant, satisfied or dissatisfied) in the Makkah, Qunfudah, Jazan, Al-Hasa and Eastern regions of Saudi Arabia during the duration of the program (between 2017-2018). Research data was gathered using a structured interview questionnaire designed by the Healthy Marriage Program in the MOH. The validity and reliability of the questionnaire were not, however, tested.

Results: In terms of assessing the program and the advice it offered, over 90% of those who took part gave a score of "excellent" or "very good" for the way in which the dangers and transmission of hemoglobinopathy were explained. Over 90% scored the materials used to raise awareness as "excellent”. However, Couples who were planning at-risk marriages differed broadly in their reactions to the medical advice given: 20.3 % decided to cancel the marriage, while 79.9 % went ahead.

Conclusions:  In this study found that satisfaction levels were high in relation to the PMSGC program, whereas advice acceptance levels were low within the population and responses were not very optimistic. It is essential to spread knowledge about the program and encourage individuals to understand its importance and comply with its requirements, and this can best be achieved by running campaigns on the subject in schools and universities.