Expanded Carrier Screening in Flanders (Belgium): An Online Survey on the Perspectives of Nonpregnant Reproductive-Aged Women

Abstract

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.

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.

Keywords::

• attitudes
• expanded carrier screening
• genetic counseling
• health policy
• intention
• knowledge
• patient perspectives
• preconception care
• reproductive genetics
• survey

Author contributions

E Van Steijvoort, H Devolder, I Geysen, S Van Epperzeel and P Borry designed the study. The data-collection was carried out by H Devolder, I Geysen, S Van Epperzeel and E Van Steijvoort. The data-analysis was performed by E Van Steijvoort. A first draft of the article was written by E Van Steijvoort and critically discussed and revised by H Devolder, I Geysen, S Van Epperzeel, P Borry, H Peeters, K Peeraer and G Matthijs. P Borry coordinated the study. All the authors have approved the final version.

Acknowledgments

The authors would like to express their gratitude to all public pharmacies throughout Flanders that distributed our flyers to potential participants. Furthermore, they would like to thank all participants that took a moment of their time to complete our online questionnaire.

Financial & competing interests disclosure

This project was financially supported by the Research Fund Flanders (FWO) grant number G094518N. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations.

Data availability

The data underlying this article are available in the article and in its online supplementary material.

Additional information

Funding

This project was financially supported by the Research Fund Flanders (FWO) grant number G094518N. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.