Premarital Screening for Hemoglobinopathies

Abstract

OBJECTIVES: The objective of the study was to address parents' perspectives and to investigate contributing factors that led to suboptimal results of premarital screening for sickle cell anemia (SCA) or thalassemia, as nearly 50% of at-risk couples decline the advice they are given and instead proceed with the marriage. METHODS: A cross-sectional study of forty parents (mother or father) who were identified as being in an at-risk couple based on results of premarital screening for carriers of SCA or thalassemia was conducted. These at-risk couples ignored medical advice, proceeded with marriage, and subsequently gave birth to a child afflicted with SCA or thalassemia. The study was composed of a self-administered questionnaire with scenario-based and advice-seeking questions from the point of view of a relative or friend in a similar marital situation. RESULTS: Results of this study found that parents of children with SCA or thalassemia advised against proceeding with an at-risk marriage. Most of the participants felt pressured to continue with their marriage, as premarital testing was conducted too late; furthermore, they felt guilty about their decision and wished that the marriage had not occurred. CONCLUSION: This study highlights some of the current drawbacks of premarital testing when it is conducted very close to the wedding, which makes it very difficult to stop an at-risk marriage, as this is socially unacceptable.