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@ARTICLE{McCrary:309879,
      author       = {J. M. McCrary and E. Van Valckenborgh and D. Horgan and E.
                      Aleksandrova and R. Bargou and R. L. Behulova and I. Belina
                      and A. L. E. Bøhme and J. Brunet and F. Burada and A.
                      Chirita-Emandi and A. Ciuca and C. Colas and A.
                      Constantinidou and R.-O. Curca and V. Cursaru and M. Dalmas
                      and Z. Daneberga and E. de Azambuja and A. De Pauw and R. De
                      Putter and T. Delikurt-Tuncalp and D. Donnelly and H.
                      Ehrencrona and L. Foretova and F. Galli and M. Genuardi and
                      R. Giles and C. Grima and R. Janavičius and H.
                      Kääriäinen and B. Klink and M. Krajc and J.
                      Kufel-Grabowska and B. Lace and L. Leitsalu and C. Le
                      Tourneau and M. Lodahl and F. Mari and E. Matos and L.
                      Mazzarella and T. H. Milagre and M. Mistrik and B. Moss and
                      A. Nolan and R. O'Shea and M. Paneque and A. Patócs and R.
                      Pestoff and H. A. Poirel and M. Risch and M. Rodrigues and
                      K. M. Roetzer and A. Ros and E. Schröck$^*$ and G.
                      Schwaninger and L. Slámová and K. Stamatopoulos and S.
                      Strang-Karlsson and K. Szczałuba and V. Szymczak and P.
                      Theis and J. Turner and O. Valcina and C. Vella and W. A. G.
                      van Zelst-Stams and K. A. W. Wadt and J. Zschocke and J.
                      Ronez and T. Ripperger and M. Van Den Bulcke and A. K.
                      Bergmann},
      title        = {{P}riority {E}uropean strategies for sustainable access to
                      high-quality genetic counselling in cancer: {A} {D}elphi
                      study.},
      journal      = {European journal of human genetics},
      volume       = {nn},
      issn         = {1018-4813},
      address      = {Basingstoke},
      publisher    = {Stockton Press},
      reportid     = {DKFZ-2026-00364},
      pages        = {nn},
      year         = {2026},
      note         = {#DKTKZFB26# / #NCTZFB26# / epub},
      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.},
      cin          = {DD01 / DD04},
      ddc          = {610},
      cid          = {I:(DE-He78)DD01-20160331 / I:(DE-He78)DD04-20160331},
      pnm          = {899 - ohne Topic (POF4-899)},
      pid          = {G:(DE-HGF)POF4-899},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:41688774},
      doi          = {10.1038/s41431-026-02015-y},
      url          = {https://inrepo02.dkfz.de/record/309879},
}