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

J. Matt McCrary; Els Van Valckenborgh; Denis Horgan; Evgenia Aleksandrova; Ralf Bargou; Regina Lohajova Behulova; Ivica Belina; Ann Liza Egesberg Bøhme; Joan Brunet; Florin Burada; Adela Chirita-Emandi; Andrada Ciuca; Chrystelle Colas; Anastasia Constantinidou; Razvan-Ovidiu Curca; 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; Ramūnas Janavičius; Helena Kääriäinen; Barbara Klink; Mateja Krajc; Joanna Kufel-Grabowska; Baiba Lace; Liis Leitsalu; Christophe Le Tourneau; Marianne Lodahl; Francesca Mari; Erika Matos; Luca Mazzarella; Tamara Hussong Milagre; Martin Mistrik; 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; Virginie Szymczak; Philippe Theis; Jacqueline Turner; Olga Valcina; Christopher Vella; Wendy A.G. van Zelst-Stams; Karin A.W. Wadt; Johannes Zschocke; Joelle Ronez; Tim Ripperger; Marc Van Den Bulcke; Anke Katharina Bergmann

doi:10.1038/s41431-026-02015-y

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

J. Matt McCrary, Els Van Valckenborgh, Denis Horgan, Evgenia Aleksandrova, Ralf Bargou, Regina Lohajova Behulova, Ivica Belina, Ann Liza Egesberg Bøhme, Joan Brunet, Florin Burada, Adela Chirita-Emandi, Andrada Ciuca, Chrystelle Colas, Anastasia Constantinidou, Razvan-Ovidiu Curca, Viorica Cursaru, Miriam Dalmas, Zanda Daneberga, Evandro de Azambuja, Antoine De PauwRobin De Putter, Turem Delikurt-Tuncalp, Deirdre Donnelly, Hans Ehrencrona, Lenka Foretova, Fabrizia Galli, Maurizio Genuardi, Rachel Giles, Claire Grima, Ramūnas Janavičius, Helena Kääriäinen, Barbara Klink, Mateja Krajc, Joanna Kufel-Grabowska, Baiba Lace, Liis Leitsalu, Christophe Le Tourneau, Marianne Lodahl, Francesca Mari, Erika Matos, Luca Mazzarella, Tamara Hussong Milagre, Martin Mistrik, 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, Virginie Szymczak, Philippe Theis, Jacqueline Turner, Olga Valcina, Christopher Vella, Wendy A.G. van Zelst-Stams, Karin A.W. Wadt, Johannes Zschocke, Joelle Ronez, Tim Ripperger, Marc Van Den Bulcke, Anke Katharina Bergmann^*

^*Corresponding author af dette arbejde

Afdeling for Genetik DIA

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.

Originalsprog	Engelsk
Tidsskrift	European Journal of Human Genetics
Antal sider	11
ISSN	1018-4813
DOI	https://doi.org/10.1038/s41431-026-02015-y
Status	E-pub ahead of print - 13 feb. 2026

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10.1038/s41431-026-02015-yLicens: CC BY

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McCrary, J. M., Van Valckenborgh, E., Horgan, D., Aleksandrova, E., Bargou, R., Behulova, R. L., Belina, I., Bøhme, A. L. E., Brunet, J., Burada, F., Chirita-Emandi, A., Ciuca, A., Colas, C., Constantinidou, A., Curca, R.-O., Cursaru, V., Dalmas, M., Daneberga, Z., de Azambuja, E., ... Bergmann, A. K. (2026). Priority European strategies for sustainable access to high-quality genetic counselling in cancer: A Delphi study. European Journal of Human Genetics. Advance online publication. https://doi.org/10.1038/s41431-026-02015-y

McCrary, JM, Van Valckenborgh, E, Horgan, D, Aleksandrova, E, Bargou, R, Behulova, RL, Belina, I, Bøhme, ALE, Brunet, J, Burada, F, Chirita-Emandi, A, Ciuca, A, Colas, C, Constantinidou, A, Curca, R-O, Cursaru, V, Dalmas, M, Daneberga, Z, de Azambuja, E, De Pauw, A, De Putter, R, Delikurt-Tuncalp, T, Donnelly, D, Ehrencrona, H, Foretova, L, Galli, F, Genuardi, M, Giles, R, Grima, C, Janavičius, R, Kääriäinen, H, Klink, B, Krajc, M, Kufel-Grabowska, J, Lace, B, Leitsalu, L, Le Tourneau, C, Lodahl, M, Mari, F, Matos, E, Mazzarella, L, Milagre, TH, Mistrik, M, Moss, B, Nolan, A, O’Shea, R, Paneque, M, Patócs, A, Pestoff, R, Poirel, HA, Risch, M, Rodrigues, M, Roetzer, KM, Ros, A, Schröck, E, Schwaninger, G, Slámová, L, Stamatopoulos, K, Strang-Karlsson, S, Szczałuba, K, Szymczak, V, Theis, P, Turner, J, Valcina, O, Vella, C, van Zelst-Stams, WAG, Wadt, KAW, Zschocke, J, Ronez, J, Ripperger, T, Van Den Bulcke, M & Bergmann, AK 2026, 'Priority European strategies for sustainable access to high-quality genetic counselling in cancer: A Delphi study', European Journal of Human Genetics. https://doi.org/10.1038/s41431-026-02015-y

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

abstract = "Europe{\textquoteright}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.",

author = "McCrary, \{J. Matt\} and \{Van Valckenborgh\}, Els and Denis Horgan and Evgenia Aleksandrova and Ralf Bargou and Behulova, \{Regina Lohajova\} and Ivica Belina and B{\o}hme, \{Ann Liza Egesberg\} and Joan Brunet and Florin Burada and Adela Chirita-Emandi and Andrada Ciuca and Chrystelle Colas and Anastasia Constantinidou and Razvan-Ovidiu Curca and Viorica Cursaru and Miriam Dalmas and Zanda Daneberga and \{de Azambuja\}, Evandro and \{De Pauw\}, Antoine and \{De Putter\}, Robin and Turem Delikurt-Tuncalp and Deirdre Donnelly and Hans Ehrencrona and Lenka Foretova and Fabrizia Galli and Maurizio Genuardi and Rachel Giles and Claire Grima and Ramūnas Janavi{\v c}ius and Helena K{\"a}{\"a}ri{\"a}inen and Barbara Klink and Mateja Krajc and Joanna Kufel-Grabowska and Baiba Lace and Liis Leitsalu and \{Le Tourneau\}, Christophe and Marianne Lodahl and Francesca Mari and Erika Matos and Luca Mazzarella and Milagre, \{Tamara Hussong\} and Martin Mistrik and Barbara Moss and Amy Nolan and Rosie O{\textquoteright}Shea and Milena Paneque and Attila Pat{\'o}cs and Rebecka Pestoff and Poirel, \{H{\'e}l{\`e}ne A.\} and Martine Risch and Manuel Rodrigues and Roetzer, \{Katharina M.\} and Andrea Ros and Evelin Schr{\"o}ck and Gunda Schwaninger and Lucie Sl{\'a}mov{\'a} and Kostas Stamatopoulos and Sonja Strang-Karlsson and Krzysztof Szcza{\l}uba and Virginie Szymczak and Philippe Theis and Jacqueline Turner and Olga Valcina and Christopher Vella and \{van Zelst-Stams\}, \{Wendy A.G.\} and Wadt, \{Karin A.W.\} and Johannes Zschocke and Joelle Ronez and Tim Ripperger and \{Van Den Bulcke\}, Marc and Bergmann, \{Anke Katharina\}",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2026.",

year = "2026",

month = feb,

day = "13",

doi = "10.1038/s41431-026-02015-y",

language = "English",

journal = "European Journal of Human Genetics",

issn = "1018-4813",

publisher = "Springer Nature",

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TY - JOUR

T1 - Priority European strategies for sustainable access to high-quality genetic counselling in cancer

T2 - A Delphi study

AU - McCrary, J. Matt

AU - Van Valckenborgh, Els

AU - Horgan, Denis

AU - Aleksandrova, Evgenia

AU - Bargou, Ralf

AU - Behulova, Regina Lohajova

AU - Belina, Ivica

AU - Bøhme, Ann Liza Egesberg

AU - Brunet, Joan

AU - Burada, Florin

AU - Chirita-Emandi, Adela

AU - Ciuca, Andrada

AU - Colas, Chrystelle

AU - Constantinidou, Anastasia

AU - Curca, Razvan-Ovidiu

AU - Cursaru, Viorica

AU - Dalmas, Miriam

AU - Daneberga, Zanda

AU - de Azambuja, Evandro

AU - De Pauw, Antoine

AU - De Putter, Robin

AU - Delikurt-Tuncalp, Turem

AU - Donnelly, Deirdre

AU - Ehrencrona, Hans

AU - Foretova, Lenka

AU - Galli, Fabrizia

AU - Genuardi, Maurizio

AU - Giles, Rachel

AU - Grima, Claire

AU - Janavičius, Ramūnas

AU - Kääriäinen, Helena

AU - Klink, Barbara

AU - Krajc, Mateja

AU - Kufel-Grabowska, Joanna

AU - Lace, Baiba

AU - Leitsalu, Liis

AU - Le Tourneau, Christophe

AU - Lodahl, Marianne

AU - Mari, Francesca

AU - Matos, Erika

AU - Mazzarella, Luca

AU - Milagre, Tamara Hussong

AU - Mistrik, Martin

AU - Moss, Barbara

AU - Nolan, Amy

AU - O’Shea, Rosie

AU - Paneque, Milena

AU - Patócs, Attila

AU - Pestoff, Rebecka

AU - Poirel, Hélène A.

AU - Risch, Martine

AU - Rodrigues, Manuel

AU - Roetzer, Katharina M.

AU - Ros, Andrea

AU - Schröck, Evelin

AU - Schwaninger, Gunda

AU - Slámová, Lucie

AU - Stamatopoulos, Kostas

AU - Strang-Karlsson, Sonja

AU - Szczałuba, Krzysztof

AU - Szymczak, Virginie

AU - Theis, Philippe

AU - Turner, Jacqueline

AU - Valcina, Olga

AU - Vella, Christopher

AU - van Zelst-Stams, Wendy A.G.

AU - Wadt, Karin A.W.

AU - Zschocke, Johannes

AU - Ronez, Joelle

AU - Ripperger, Tim

AU - Van Den Bulcke, Marc

AU - Bergmann, Anke Katharina

PY - 2026/2/13

Y1 - 2026/2/13

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/105030162922

U2 - 10.1038/s41431-026-02015-y

DO - 10.1038/s41431-026-02015-y

M3 - Journal article

C2 - 41688774

AN - SCOPUS:105030162922

SN - 1018-4813

JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

ER -

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

Abstract

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