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Genetic counseling services for hereditary breast and ovarian cancer: patients’ experience and satisfaction with different service models

European Journal of Human Genetics (2026) Cite this article

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Abstract

In the context of limited resources and growing demand, patients access genetic testing for hereditary breast and ovarian cancer (HBOC) through various service models, some of which include genetic counseling sessions. This study assessed the impact of these service models and participation in genetic counseling on patients’ experiences and satisfaction with the genetic testing process. A total of 501 patients undergoing genetic testing for HBOC completed a 35-item survey, which included the Genetic Counseling Satisfaction Scale, the Decision Regret Scale, and a modified Royal Marsden Satisfaction Questionnaire. Additional information was gathered from the medical records. Descriptive statistics and Fisher’s exact tests were employed for the analysis. Four aspects of the genetic testing experience differed between service models and attendance to genetic counseling: i) receipt of informational materials prior to testing, ii) information that additional discussions with the genetic team were possible, iii) clarity regarding the timeline for receiving results, and iv) explanation of how the results would be delivered. The service model and participation in genetic counseling seem to influence patients’ experiences with genetic testing for HBOC. However, satisfaction was generally high and decision regret was low across all service models, highlighting the promise of care models designed to enhance accessibility.

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Fig. 1: Participation in a genetic counseling session according to data collected by the survey and medical records.
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Data available upon reasonable request to the corresponding author.

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Acknowledgements

The authors are very grateful to all participating sites for their invaluable support and contributions.

Funding

The C-MOnGene study is funded by Oncopole, which receives financing from Merck Canada Inc., Quebec Research Fund—Health (FRQ-S), and GSK. J.S. holds the Canada Research Chair in Oncogenetics. H.N. holds a senior research scholarship from the FRQ-S. The funding agencies mentioned above had no role in the design, analysis, and interpretation of the data; and in writing the manuscript

Author information

Author notes

  1. These authors contributed equally: Ouerdia Haroun, Julie Lapointe.

Authors and Affiliations

  1. Oncology Division, CHU de Québec-Université Laval Research Center, Québec, QC, Canada

    Ouerdia Haroun, Julie Lapointe, Camille Raîche, Jocelyne Chiquette, Karine Bouchard, Gabrielle Olivier Chevrier, Arian Omeranovic, Jacques Simard, Michel Dorval & Hermann Nabi

  2. CIUSSS Saguenay Lac-St-Jean, Chicoutimi, QC, Canada

    Rachel Guérard, Tania Cruz-Marino, Omar Touhami, Sylvain Gagnon, Marie-Claude Roy, Valérie Faucher, Josianne Leblanc & Marie-Eve Dubeau

  3. Department of Health Science, Université du Québec à Rimouski, Rimouski, QC, Canada

    Anne-Sophie Bergeron

  4. CHU de Québec-Université Laval, Québec, QC, Canada

    Jocelyne Chiquette, Philippe Lachapelle, Madeleine Côté, Lily Boily, Carmen Brisson, Jean Gekas, Karine Boisvert, Claire Brousseau, Lysanne Castonguay, Isabelle Gosselin, Marie-Claude Renaud, Maria-Gabriela Ruiz Mangas, Audrey Paquet-Beaupré, Marie-Eve Bélanger, Sandra Blanchette, Mathias Cavaillé, Marie Plante, Christine Desbiens & Martin Beaumont

  5. University of Montreal Hospital Research Centre (CRCHUM), Montréal, QC, Canada

    Marie-Pascale Pomey

  6. School of Public Health, Department of Health Management, Evaluation of Policy, Université de Montréal, Montréal, QC, Canada

    Marie-Pascale Pomey

  7. CISSS Chaudière-Appalaches Research Center, Lévis, QC, Canada

    Johanne Hébert & Michel Dorval

  8. Department of Health Science, Université du Québec à Rimouski, Lévis Campus, Lévis, QC, Canada

    Johanne Hébert

  9. CISSS Bas St-Laurent, Rimouski, QC, Canada

    Arnaud Blanchet Saint-Pierre

  10. CISSS Chaudière-Appalaches, Lévis, QC, Canada

    Marie-Michelle Racine

  11. Molecular Medicine Department, Faculty of Medicine, Université Laval, Québec, QC, Canada

    Jacques Simard

  12. Faculty of Pharmacy, Université Laval, Québec, QC, Canada

    Michel Dorval

  13. Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Québec, QC, Canada

    Hermann Nabi

Authors
  1. Ouerdia Haroun
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  2. Julie Lapointe
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  41. Hermann Nabi
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Contributions

Conceptualization: HN and MD; Data curation: HN, JL (Julie Lapointe); Formal analysis: HN, JL (Julie Lapointe), OH; Funding acquisition: HN, MD; Investigation: HN, MD; Methodology: JL (Julie Lapointe), MD, OH, RG, ASB, CR, JC, KB (Karine Bouchard), MPP, JH, GOC, PL, AO, MC (Madeleine Côté), LB, CB (Carmen Brisson), JG, TCM, OT, ABSP, SG, KB (Karine Boisvert), CB (Claire Brousseau), MCR (Marie-Claude Renaud), MGRM, APB, MEB, MMR, MCR (Marie-Claude Roy), SB, VF, JL (Josianne Leblanc), MED, MC (Mathias Cavaillé), MP, CD, MB, JS et HN; Project administration: JL (Julie Lapointe) and RG; Resources: HN; Software: SAS, version 9.4 (SAS Institute Inc).; Supervision: HN and MD; Validation: HN; Visualization: JL (Julie Lapointe), OH; Writing-original draft: HN, JL (Julie Lapointe), OH; Writing-review & editing: JL (Julie Lapointe), MD, OH, RG, ASB, CR, JC, KB (Karine Bouchard), MPP, JH, GOC, PL, AO, MC (Madeleine Côté), LB, CB (Carmen Brisson), JG, TCM, OT, ABSP, SG, KB (Karine Boisvert), CB (Claire Brousseau), MCR (Marie-Claude Renaud), MGRM, APB, MEB, MMR, MCR (Marie-Claude Roy), SB, VF, JL (Josianne Leblanc), MED, MC (Mathias Cavaillé), MP, CD, MB, JS et HN.

Corresponding author

Correspondence to Hermann Nabi.

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The authors have no conflict of interest related to this work to declare.

Ethics approval and consent to participate

This study protocol has been examined by the Research Ethics Board of the CHU de Québec-Université Laval. The Board waived the ethics approval requirement since the study’s purpose is to evaluate the quality of services already in place at the institution. The Institutional Review Board provided an official waiver (2021-5476) given that this is considered as a quality improvement research project. All subjects who participated in the study gave their informed consent.

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Haroun, O., Lapointe, J., Guérard, R. et al. Genetic counseling services for hereditary breast and ovarian cancer: patients’ experience and satisfaction with different service models. Eur J Hum Genet (2026). https://doi.org/10.1038/s41431-026-02031-y

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