Priority European strategies for sustainable access to high-quality genetic counselling in cancer: A Delphi study

Europe's Beating Cancer Plan is a substantial European Union (EU) investment into cancer prevention and treatment. Integration of genetic services towards personalised cancer prevention and care is a flagship of this plan. Genetic counselling is critical to this integration, facilitating informed patient decision making and improved clinical management. However, growing demands for genetic testing and concurrently increasing workforce shortages necessitate new strategies to equitably ensure sustainable access to counselling across the EU. This project aimed to inform future European activities by identifying priority European strategies for addressing common European genetic literacy, workforce, and reimbursement barriers to genetic counselling in cancer noted in prior work. A Delphi survey was conducted, with genetics, oncology, and patient stakeholders invited from all EU Member States. The response rate was 62% (124 total invitations). Over three phases, 77 participants - 28 geneticists; 14 oncologists; 18 genetic counsellors; 16 patient representatives; 1 otherwise qualified expert - rated 19 strategies according to their Importance, Urgency, and Feasibility and selected their top three priority strategies. Five strategies met pre-defined consensus thresholds and received a clear plurality of priority ratings: (1) EU-wide genetic counsellor recognition; (2) Including genetics expertise in oncology guideline creation; (3) Shared EU genetic counsellor registration/education with legal weight; (4) Mandatory counselling reimbursement when clinical guidelines are met; (5) Mandatory inclusion of genetics in oncology fellowship/continuing education. Results provide a roadmap of European actions which promise to sustainably improve access to genetic counselling in cancer care. Upcoming and ongoing EU projects promise to advance their implementation.

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Publication Details

Journal
European Journal of Human Genetics
Published
2026-02-13
DOI
https://doi.org/10.1038/s41431-026-02015-y
Primary Topic
BRCA gene mutations in cancer
Type
article
Field-Weighted Citation Impact
0.00

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article

Priority European strategies for sustainable access to high-quality genetic counselling in cancer: A Delphi study

Els Van Valckenborgh, Amy Nolan, Baiba Lāce, Denis Horgan et al.
European Journal of Human Genetics
BRCA gene mutations in cancer
article

Priority European strategies for sustainable access to high-quality genetic counselling in cancer: A Delphi study

Els Van Valckenborgh, Amy Nolan, Baiba Lāce, Denis Horgan, Gunda Schwaninger, Viorica Cursaru, Regina Lohajova Behulova, Christopher Vella, Tim Ripperger, Marianne Lodahl, Anastasia Constantinidou, Jacqueline A. Turner, Ralf C. Bargou, H. Kääriäinen, Zanda Daneberga, Barbara Klink, Luca Mazzarella, Liis Leitsalu, V. Szymczak, Lucie Slámová, C. Le Tourneau, Chrystelle Colas, Krzysztof Szczałuba, Sonja Strang‐Karlsson, Wendy A G van Zelst-Stams, Hélène A. Poirel, Martin Mistrík, Tamara Milagre, Attila Patócs, Erika Matos, Curca Ro, Rebecka Pestoff, Andrada Ciucă, Turem Delikurt-Tuncalp, Karin Wadt, Philippe Theis, Joelle Ronez, Adela Chiriţă-Emandi, Claire Grima, Katharina M Roetzer, Francesca Mari, Marc Van den Bulcke, R. Janavičius, Andrea Ros, Brunet Joan, Evelin Schröck, Deirdre Donnelly, Olga Valciņa, Manuel Rodrigues, Mateja Krajc, Milena Paneque, Florin Burada, Anke Katharina Bergmann, Rachel Giles, J. Matt McCrary, Martine Risch, Evandro de Azambuja, Fabrizia Galli, Joanna Kufel-Grabowska, Antoine De Pauw, Johannes Zschocke, Evgenia Aleksandrova, Hans Ehrencrona, Ivica Belina, Maurizio Genuardi, Rosie O’Shea, Ann Liza Egesberg Bøhme, Lenka Foretova, Barbara Moss
article en

Abstract

Europe's Beating Cancer Plan is a substantial European Union (EU) investment into cancer prevention and treatment. Integration of genetic services towards personalised cancer prevention and care is a flagship of this plan. Genetic counselling is critical to this integration, facilitating informed patient decision making and improved clinical management. However, growing demands for genetic testing and concurrently increasing workforce shortages necessitate new strategies to equitably ensure sustainable access to counselling across the EU. This project aimed to inform future European activities by identifying priority European strategies for addressing common European genetic literacy, workforce, and reimbursement barriers to genetic counselling in cancer noted in prior work. A Delphi survey was conducted, with genetics, oncology, and patient stakeholders invited from all EU Member States. The response rate was 62% (124 total invitations). Over three phases, 77 participants - 28 geneticists; 14 oncologists; 18 genetic counsellors; 16 patient representatives; 1 otherwise qualified expert - rated 19 strategies according to their Importance, Urgency, and Feasibility and selected their top three priority strategies. Five strategies met pre-defined consensus thresholds and received a clear plurality of priority ratings: (1) EU-wide genetic counsellor recognition; (2) Including genetics expertise in oncology guideline creation; (3) Shared EU genetic counsellor registration/education with legal weight; (4) Mandatory counselling reimbursement when clinical guidelines are met; (5) Mandatory inclusion of genetics in oncology fellowship/continuing education. Results provide a roadmap of European actions which promise to sustainably improve access to genetic counselling in cancer care. Upcoming and ongoing EU projects promise to advance their implementation.

European Journal of Human Genetics
Semmelweis University (HU), University of Siena (IT), Linköping University (SE), Università Cattolica del Sacro Cuore (IT), European Union Agency for Law Enforcement Cooperation (NL), Belfast Health and Social Care Trust (GB), The University of Sydney (AU), Université Libre de Bruxelles (BE), University of Helsinki (FI), Innsbruck Medical University (AT), Radboud University Nijmegen (NL), Inserm (FR), Vilnius University (LT), University of Nicosia (CY), German Cancer Research Center (DE), Universidade do Porto (PT), Lund University (SE), Universität Innsbruck (AT), Trinity College Dublin (IE), Heidelberg University (DE), Medical University of Warsaw (PL), Université Paris-Saclay (FR), Irish Cancer Society (IE), Helsinki University Hospital (FI), Mater Dei Hospital (MT), Ghent University Hospital (BE), Helmholtz-Zentrum Dresden-Rossendorf (DE), Institut Jules Bordet (BE), Tartu University Hospital (EE), Agostino Gemelli University Polyclinic (IT), Copenhagen University Hospital (DK), Rigshospitalet (DK), Radboud University Medical Center (NL), Mater Misericordiae University Hospital (IE), University of Medicine and Pharmacy of Craiova (RO), Institute of Oncology Ljubljana (SI), Babeș-Bolyai University (RO), Maastricht University (NL), University of Cyprus (CY), Medizinische Hochschule Hannover (DE), Finnish Institute for Health and Welfare (FI), Victor Babeș University of Medicine and Pharmacy Timișoara (RO), Husky (Luxembourg) (LU), Institute of Haematology and Blood Transfusion (CZ), Riga East University Hospital (LV), Comprehensive Cancer Center Mainfranken (DE), State Research Institute Centre for Innovative Medicine (LT), German Cancer Society (DE), Institut Català d'Oncologia (ES), National Center for Tumor Diseases (DE), Institut d'Investigació Biomèdica de Girona (ES), Masaryk Memorial Cancer Institute (CZ), Medical Genetics Center (DE), National Institute of Oncology (HU), Camera de Comerț Industrie și Agricultură Timișoara (RO), Total (Belgium) (BE), St Anna Children's Hospital (AT), Riga Stradiņš University (LV), Universitätsklinikum Würzburg (DE), Riga Technical College (LV), Spišcol (Slovakia) (SK), Centre for Research and Technology Hellas (GR), Ministry for Health (MT), Association for the Development of Douro Viticulture (PT), Skåne University Hospital (SE), 1 Decembrie 1918 University (RO), Croatian Science Foundation (HR), Laboratoire National de Santé (LU), Sciensano (Belgium) (BE), European Society of Concurrent Enterprising Network (IT), Danish Cancer Society (DK), Metropolitana Milanese (Italy) (IT), Linköping University Hospital (SE), Hospital Universitari Germans Trias i Pujol (ES), St. James's Hospital (IE), i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto (PT), Vysoká Škola Zdravotníctva a Sociálnej Práce sv. Alžbety (SK), Vilnius University Hospital Santariskiu Klinikos (LT), University Hospital Carl Gustav Carus (DE), The Patients Association (GB), St. Anna Children's Cancer Research Institute, Deutsches Konsortium für Translationale Krebsforschung (DE), Université Paris 8 (FR), Cyprus Institute of Neurology and Genetics (CY), University of Tartu (EE), European Institute of Oncology (IT), Gdańsk Medical University (PL), Technische Universität Dresden (DE), Institut Curie (FR), University of Latvia (LV)
European Commission
Quality Education
Openalex Percentile: Top 54%
BRCA gene mutations in cancer
DOIOpen Access PDFOpenAlex
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