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Genetic counselling legislation and practice in cancer in EU Member States

McCrary, J. Matt ; Van Valckenborgh, Els ; Poirel, Hélène A. ; de Putter, Robin ; van Rooij, Jeroen ; Horgan, Denis ; Dierks, Marie Luise ; Antonova, Olga ; Brunet, Joan and Chirita-Emandi, Adela , et al. (2024) In European Journal of Public Health 34(4). p.666-675
Abstract

Background: Somatic and germline genetic alterations are significant drivers of cancer. Increasing integration of new technologies which profile these alterations requires timely, equitable and high-quality genetic counselling to facilitate accurate diagnoses and informed decision-making by patients and their families in preventive and clinical settings. This article aims to provide an overview of genetic counselling legislation and practice across European Union (EU) Member States to serve as a foundation for future European recommendations and action. Methods: National legislative databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts... (More)

Background: Somatic and germline genetic alterations are significant drivers of cancer. Increasing integration of new technologies which profile these alterations requires timely, equitable and high-quality genetic counselling to facilitate accurate diagnoses and informed decision-making by patients and their families in preventive and clinical settings. This article aims to provide an overview of genetic counselling legislation and practice across European Union (EU) Member States to serve as a foundation for future European recommendations and action. Methods: National legislative databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts from each Member State were conducted to validate legislative search results and provide detailed insights into genetic counselling practice in each country. Results: Genetic counselling is included in national legislative documents of 22 of 27 Member States, with substantial variation in legal mechanisms and prescribed details (i.e. the ‘who, what, when and where’ of counselling). Practice is similarly varied. Workforce capacity (25 of 27 Member States) and genetic literacy (all Member States) were common reported barriers. Recognition and/or better integration of genetic counsellors and updated legislation and were most commonly noted as the ‘most important change’ which would improve practice. Conclusions: This review highlights substantial variability in genetic counselling across EU Member States, as well as common barriers notwithstanding this variation. Future recommendations and action should focus on addressing literacy and capacity challenges through legislative, regulatory and/or strategic approaches at EU, national, regional and/or local levels.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
European Journal of Public Health
volume
34
issue
4
pages
10 pages
publisher
Oxford University Press
external identifiers
  • pmid:38905592
  • scopus:85200272343
ISSN
1101-1262
DOI
10.1093/eurpub/ckae093
language
English
LU publication?
yes
id
3e74062e-06d9-4087-a6b8-b5a80b7f78b9
date added to LUP
2024-09-09 15:46:44
date last changed
2024-09-10 03:00:04
@article{3e74062e-06d9-4087-a6b8-b5a80b7f78b9,
  abstract     = {{<p>Background: Somatic and germline genetic alterations are significant drivers of cancer. Increasing integration of new technologies which profile these alterations requires timely, equitable and high-quality genetic counselling to facilitate accurate diagnoses and informed decision-making by patients and their families in preventive and clinical settings. This article aims to provide an overview of genetic counselling legislation and practice across European Union (EU) Member States to serve as a foundation for future European recommendations and action. Methods: National legislative databases of all 27 Member States were searched using terms relevant to genetic counselling, translated as appropriate. Interviews with relevant experts from each Member State were conducted to validate legislative search results and provide detailed insights into genetic counselling practice in each country. Results: Genetic counselling is included in national legislative documents of 22 of 27 Member States, with substantial variation in legal mechanisms and prescribed details (i.e. the ‘who, what, when and where’ of counselling). Practice is similarly varied. Workforce capacity (25 of 27 Member States) and genetic literacy (all Member States) were common reported barriers. Recognition and/or better integration of genetic counsellors and updated legislation and were most commonly noted as the ‘most important change’ which would improve practice. Conclusions: This review highlights substantial variability in genetic counselling across EU Member States, as well as common barriers notwithstanding this variation. Future recommendations and action should focus on addressing literacy and capacity challenges through legislative, regulatory and/or strategic approaches at EU, national, regional and/or local levels.</p>}},
  author       = {{McCrary, J. Matt and Van Valckenborgh, Els and Poirel, Hélène A. and de Putter, Robin and van Rooij, Jeroen and Horgan, Denis and Dierks, Marie Luise and Antonova, Olga and Brunet, Joan and Chirita-Emandi, Adela and Colas, Chrystelle and Dalmas, Miriam and Ehrencrona, Hans and Grima, Claire and Janavičius, Ramūnas and Klink, Barbara and Koczok, Katalin and Krajc, Mateja and Lace, Baiba and Leitsalu, Liis and Mistrik, Martin and Paneque, Milena and Primorac, Dragan and Roetzer, Katharina M. and Ronez, Joelle and Slámová, Lucie and Spanou, Elena and Stamatopoulos, Kostas and Stoklosa, Tomasz and Strang-Karlsson, Sonja and Szakszon, Katalin and Szczałuba, Krzysztof and Turner, Jacqueline and van Dooren, Marieke F. and van Zelst-Stams, Wendy A.G. and Vassallo, Loredana Maria and Wadt, Karin A.W. and Žigman, Tamara and Ripperger, Tim and Genuardi, Maurizio and Van den Bulcke, Marc and Bergmann, Anke Katharina}},
  issn         = {{1101-1262}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{666--675}},
  publisher    = {{Oxford University Press}},
  series       = {{European Journal of Public Health}},
  title        = {{Genetic counselling legislation and practice in cancer in EU Member States}},
  url          = {{http://dx.doi.org/10.1093/eurpub/ckae093}},
  doi          = {{10.1093/eurpub/ckae093}},
  volume       = {{34}},
  year         = {{2024}},
}