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Knowledge, attitudes and preferences regarding reproductive genetic carrier screening among reproductive-aged men and women in Flanders (Belgium)

European Journal of Human Genetics volume 30, pages 1255–1261 (2022)Cite this article

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Abstract

Through carrier screening couples at-risk of conceiving a child with an autosomal recessive or X-linked condition can be identified prior to conception. The aim of this study was to assess knowledge, attitudes and preferences regarding reproductive genetic carrier screening (RGCS) among reproductive-aged men and women in Flanders (Belgium). Women and men of reproductive age visiting their pharmacist were invited to answer a self-administered questionnaire. Prior to filling in the questionnaire, participants were asked to read an information leaflet explaining some key concepts about RGCS. Our sample included 387 individuals of reproductive age, of which 68.5% were female and 31.5% were male. Most of the participants were below 34 years old (72.9%), didn’t have children (68.6%) and were currently in a relationship (69.1%). Offering RGCS to couples that want to have children was found acceptable by 86% of participants. However, fewer participants would consider RGCS for themselves in the future (61%). We observed a positive correlation between attitude score/knowledge score and the intention to have RGCS. Half of the participants (50.9%) preferred the disclosure of individual test results. Most of participants indicated that RGCS should be offered through the gynecologist (81.1%), followed by the GP (71.5%) and the Centre for Human Genetics (64.8%). About 68.9% of participants were willing to pay out-of-pocket for an RGCS test. We recommend that RGCS should ideally be implemented through a tailored implementation strategy whereby individual needs and preferences can be taken into account.

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Data availability

All data generated or analysed during this study are included in this published article [and its supplementary information files].

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Acknowledgements

The authors would like to express their gratitude to all pharmacies throughout Flanders that allowed our research team to recruit potential participants in their pharmacies. Furthermore they would like to thank all participants that took a moment of their time to complete our questionnaire.

Funding

This project was financially supported by the Research Fund Flanders (FWO).

Author information

Authors and Affiliations

  1. Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium

    Eva Van Steijvoort, Heleen Devolder, Inne Geysen, Silke Van Epperzeel & Pascal Borry

  2. Department of Human Genetics, KU Leuven, Leuven, Belgium

    Hilde Peeters

  3. Department of Development and Regeneration, Woman and Child, KU Leuven, Leuven, Belgium

    Karen Peeraer

  4. Department of Human Genetics, Laboratory for Molecular Diagnosis, KU Leuven, Leuven, Belgium

    Gert Matthijs

Authors
  1. Eva Van Steijvoort
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  2. Heleen Devolder
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  3. Inne Geysen
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  4. Silke Van Epperzeel
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  5. Hilde Peeters
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  6. Karen Peeraer
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  7. Gert Matthijs
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  8. Pascal Borry
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Contributions

EVS, HD, IG, SVE and PB designed the study. The data-collection was carried out by HD, IG, SVE and EVS. The data-analysis was performed by EVS. A first draft of the manuscript was written by EVS and critically discussed and revised by HD, IG, SVE, PB, HP, KP and GM. PB coordinated the study. All the authors have approved the final version.

Corresponding author

Correspondence to Eva Van Steijvoort.

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Competing interests

The authors declare no competing interests.

Ethical approval

The study protocol received ethical approval from the Research Ethics Committee UZ/KU Leuven (MP010414). The questionnaire was anonymous and participation was voluntary.

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Van Steijvoort, E., Devolder, H., Geysen, I. et al. Knowledge, attitudes and preferences regarding reproductive genetic carrier screening among reproductive-aged men and women in Flanders (Belgium). Eur J Hum Genet 30, 1255–1261 (2022). https://doi.org/10.1038/s41431-022-01082-1

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  • DOI: https://doi.org/10.1038/s41431-022-01082-1

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