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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; Chirita-Emandi, Adela; Colas, Chrystelle; Dalmas, Miriam; Ehrencrona, Hans; Grima, Claire; Janavicius, Ramunas; Klink, Barbara; Koczok, Katalin; Krajc, Mateja; Lace, Baiba; Leitsalu, Liis; Mistrik, Martin; Paneque, Milena; Primorac, Dragan; Roetzer, Katharina M; Ronez, Joelle; Slámová, Lucie; Spanou, Elena; Stamatopoulos, Kostas; Stoklosa, Tomasz; Strang-Karlsson, Sonja; Szakszon, Katalin; Szczaluba, Krzysztof; Turner, Jacqueline; van Dooren, Marieke F; van Zelst-Stams, Wendy A G; Vassallo, Loredana-Maria; Wadt, Karin A W; Zigman, Tamara; Ripperger, Tim; Genuardi, Maurizio; Van den Bulcke, Marc; Bergmann, Anke Katharina.
Afiliación
  • McCrary JM; Department of Human Genetics, Hannover Medical School, Hannover, Germany.
  • Van Valckenborgh E; Cancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium.
  • Poirel HA; Cancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium.
  • de Putter R; Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.
  • van Rooij J; Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands.
  • Horgan D; European Alliance for Personalised Medicine, Brussels, Belgium.
  • Dierks ML; Institute for Epidemiology, Social Medicine, and Health System Research, Hannover Medical School, Hannover, Germany.
  • Antonova O; Department of Medical Genetics, Medical University of Sofia, Sofia, Bulgaria.
  • Brunet J; Hereditary Cancer Program, Catalan Institute of Oncology, IDIBGI, Girona, Spain.
  • Chirita-Emandi A; Department of Microscopic Morphology, Genetics Discipline, Center of Genomic Medicine, University of Medicine and Pharmacy "Victor Babes", Timisoara, Romania.
  • Colas C; Regional Center of Medical Genetics Timis, Clinical Emergency Hospital for Children "Louis Turcanu", part of ERN ITHACA, Timisoara, Romania.
  • Dalmas M; Département de Génétique, Institut Curie, Paris, France.
  • Ehrencrona H; INSERM U830, Université Paris Cité, Paris, France.
  • Grima C; Ministry for Health, Valleta, Malta.
  • Janavicius R; Department of Clinical Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Region Skane, Lund, Sweden.
  • Klink B; Division of Clinical Genetics, Department of Laboratory Medicine, Lund University, Lund, Sweden.
  • Koczok K; Mater Dei Hospital, Msida, Malta.
  • Krajc M; Faculty of Medicine, Department of Human and Medical Genetics, Institute of Biomedical Sciences, Vilnius University, Vilnius, Lithuania.
  • Lace B; State Research Institute Center for Innovative Medicine, Vilnius, Lithuania.
  • Leitsalu L; National Center of Genetics, Laboratoire National de Santé, Dudelange, Luxembourg.
  • Mistrik M; Department of Laboratory Medicine, University of Debrecen Medical and Health Science Center, Debrecen, Hungary.
  • Paneque M; Institute of Oncology Ljubljana, Ljubljana, Slovenia.
  • Primorac D; Riga East Clinical University, Riga, Latvia.
  • Roetzer KM; Institute of Clinical and Preventive Medicine, University of Latvia, Riga, Latvia.
  • Ronez J; Institute of Genomics, Faculty of Science and Technology, University of Tartu, Tartu, Estonia.
  • Slámová L; Genetics and Personalized Medicine Clinic, Tartu University Hospital, Tartu, Estonia.
  • Spanou E; Department of Medical Genetics, Unilabs, Spisská Nová Ves, Slovakia.
  • Stamatopoulos K; CGPP-Centre for Predictive and Preventive Genetics, Institute for Molecular and Cell Biology (IBMC), Institute for Research and Innovation in Health (i3S), University of Porto, Porto, Portugal.
  • Stoklosa T; ICBAS-School of Medicine and Biomedical Sciences, University of Porto, Porto, Portugal.
  • Strang-Karlsson S; St Catherine Specialty Hospital, Zagreb, Croatia.
  • Szakszon K; Medical School, University of Split, Split, Croatia.
  • Szczaluba K; Faculty of Medicine, Josip Juraj Strossmayer University of Osijek, Osijek, Croatia.
  • Turner J; Faculty of Dental Medicine and Health, Josip Juraj Strossmayer University of Osijek, Osijek, Croatia.
  • van Dooren MF; Medical School, University of Rijeka, Rijeka, Croatia.
  • van Zelst-Stams WAG; Medical School REGIOMED, Coburg, Germany.
  • Vassallo LM; Eberly College of Science, The Pennsylvania State University, University Park, PA, USA.
  • Wadt KAW; The Henry C. Lee College of Criminal Justice and Forensic Sciences, University of New Haven, West Haven, CT, USA.
  • Zigman T; Department of Paediatrics, University Hospital Center Zagreb and University of Zagreb School of Medicine, Zagreb, Croatia.
  • Ripperger T; Labdia Labordiagnostik, Vienna, Austria.
  • Genuardi M; St Anna Children's Cancer Research Institute (CCRI), Vienna, Austria.
  • Van den Bulcke M; Department of Human Genetics, Hannover Medical School, Hannover, Germany.
  • Bergmann AK; Institute of Hematology and Blood Transfusion, Prague, Czech Republic.
Eur J Public Health ; 34(4): 666-675, 2024 Aug 01.
Article en En | MEDLINE | ID: mdl-38905592
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 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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Unión Europea / Asesoramiento Genético / Neoplasias Límite: Humans Idioma: En Revista: Eur J Public Health Asunto de la revista: EPIDEMIOLOGIA / SAUDE PUBLICA Año: 2024 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
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XML
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Unión Europea / Asesoramiento Genético / Neoplasias Límite: Humans Idioma: En Revista: Eur J Public Health Asunto de la revista: EPIDEMIOLOGIA / SAUDE PUBLICA Año: 2024 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Reino Unido