Aim: Despite a considerable interest in expanded carrier screening (ECS) in the general population, actual uptake of ECS remains low. More insights are needed to better understand the perspectives of reproductive-aged individuals. Materials & methods: Nonpregnant women of reproductive age recruited through public pharmacies throughout Flanders (Belgium) were invited to participate in an online survey. Results: Most participants (63.6%) indicated they would consider ECS for themselves in the future. About one in two participants showed a positive attitude toward ECS. Conclusion: This study reports valuable insights in the perspectives of nonpregnant reproductive-aged women in Flanders (Belgium) regarding ECS that can be used in the ongoing debate on the responsible implementation of ECS.
Keywords: attitudes; expanded carrier screening; genetic counseling; health policy; intention; knowledge; patient perspectives; preconception care; reproductive genetics; survey.
Lay abstract Previous studies have reported a considerable interest in carrier screening for hereditary conditions among individuals in the general population, but actual uptake remains low. This study examines the perspectives of nonpregnant reproductive-aged women in Flanders (Belgium) regarding expanded carrier screening (ECS) for hereditary conditions to gain more insights in factors that possibly influence the opinions of reproductive-aged women. These insights are crucial to ensure a responsible implementation of ECS within healthcare services and to make sure that future parents are making informed choices when they are presented with the choice to accept or decline ECS. The results of this study can be used by healthcare providers interacting with couples planning a pregnancy to improve pre-/post-test counseling services. Which in turn can help to manage expectations and reduce misconceptions among potential users of ECS.