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Poster session 23

1725P - Genetic counselling for cancer in EU member states: Review and foundation for consensus recommendations

Date

21 Oct 2023

Session

Poster session 23

Topics

Genetic and Genomic Testing;  Cancer Prevention;  Genetic Testing and Counselling

Tumour Site

Presenters

J. Matt McCrary

Citation

Annals of Oncology (2023) 34 (suppl_2): S925-S953. 10.1016/S0923-7534(23)01945-2

Authors

J..M. McCrary1, E. Van Valckenborgh2, J. van Rooij3, K. Van Steen4, M. Vaht5, A. Metspalu5, A. Uitterlinden3, M. Genuardi6, H.A. Poirel2, A.K. Bergmann1

Author affiliations

  • 1 Institute Of Human Genetics, Hannover Medical School, 30625 - Hannover/DE
  • 2 Cancer Centre, Department Of Epidemiology And Public Health, Sciensano, 1050 - Brussel/BE
  • 3 Department Of Internal Medicine, Erasmus MC, 3000 CA - Rotterdam/NL
  • 4 Department Of Human Genetics, KU Leuven, 3000 - Leuven/BE
  • 5 Institute Of Genomics, University of Tartu, 50090 - Tartu/EE
  • 6 Istituto Di Medicina Genomica, Università Cattolica del Sacro Cuore - Fondazione Policlinico Universitario Agostino Gemelli IRCCS, 00168 - Rome/IT

Resources

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Abstract 1725P

Background

Somatic and germline genetic alterations are significant drivers of cancer development, with new technologies to profile these alterations a major asset for personalized diagnosis, prognosis, and therapy, as well as prevention. Effective integration of genomic medicine into cancer care requires high-quality genetic counselling to facilitate informed decision-making by patients and their families. However, timely delivery of genetic counselling is complex, with rapidly increasing usage of clinical genetic services necessitating alternative delivery and reimbursement strategies. Further, common standards are needed to ensure consistent quality across the EU. This project aims to survey genetic counselling legislation and practice across EU Member States to provide a foundation for consensus genetic counselling recommendations.

Methods

National legislation databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts (medical geneticists/counsellors, oncologists) from each EU Member State are being conducted to validate legislation search results and provide detailed insights into genetic counselling practice in each country.

Results

Genetic counselling is included in legislation as a mandatory component of clinical genetic services in 22/27 (81%) Member States. Legislation in 9/27 (33%) Member States prescribes the personnel, content, and timing of genetic counselling; legislation in 13/27 (48%) Member States generally mandates the inclusion of genetic counselling. Interviews reveal that current clinical workflows consistently lead to suboptimal patient waiting times across Member States, driven by limited availability of genetics expertise. Specialized genetic counsellors and cooperative interdisciplinary approaches are sparsely utilized.

Conclusions

The inclusion of genetic counselling in legislation of most EU Member States underscores its importance. Forthcoming consensus recommendations will aim to propose strategies to ensure this importance is reflected by sustainable EU-wide integration of high-quality genetic counselling into cancer care.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

European Commission.

Disclosure

All authors have declared no conflicts of interest.

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