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