-
Something wrong with this record ?
Genetic counselling legislation and practice in cancer in EU Member States
JM. McCrary, E. Van Valckenborgh, HA. Poirel, R. de Putter, J. van Rooij, D. Horgan, ML. Dierks, O. Antonova, J. Brunet, A. Chirita-Emandi, C. Colas, M. Dalmas, H. Ehrencrona, C. Grima, R. Janavičius, B. Klink, K. Koczok, M. Krajc, B. Lace, L....
Language English Country England, Great Britain
Document type Journal Article
Grant support
CAN.HEAL Consortium
101080009
European Union
P-MIP-22-187
Research Council of Lithuania Project
P-MIP-22-187
Research Council of Lithuania
AstraZeneca
NLK
Directory of Open Access Journals
from 2022
Free Medical Journals
from 1996 to 1 year ago
PubMed Central
from 2008
Open Access Digital Library
from 1996-01-01
CINAHL Plus with Full Text (EBSCOhost)
from 2006-01-02
Oxford Journals Open Access Collection
from 1991-01-01
- MeSH
- European Union * MeSH
- Genetic Counseling * legislation & jurisprudence MeSH
- Genetic Testing legislation & jurisprudence MeSH
- Humans MeSH
- Neoplasms * genetics MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
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.
Cancer Centre Department of Epidemiology and Public Health Sciensano Brussels Belgium
Center for Medical Genetics Ghent University Hospital Ghent Belgium
Clinical Genetics Department The Cyprus Institute of Neurology and Genetics Nicosia Cyprus
Département de Génétique Institut Curie Paris France
Department of Clinical Genetics Erasmus Medical Center Rotterdam The Netherlands
Department of Clinical Genetics University Hospital of Copenhagen Rigshospitalet Copenhagen Denmark
Department of Human Genetics Hannover Medical School Hannover Germany
Department of Human Genetics Radboud University Medical Center Nijmegen The Netherlands
Department of Internal Medicine Erasmus Medical Center Rotterdam The Netherlands
Department of Medical Genetics Medical University of Sofia Sofia Bulgaria
Department of Medical Genetics Medical University of Warsaw Warsaw Poland
Department of Medical Genetics Unilabs Spišská Nová Ves Slovakia
Department of Tumor Biology and Genetics Medical University of Warsaw Warsaw Poland
Division of Clinical Genetics Department of Laboratory Medicine Lund University Lund Sweden
Eberly College of Science The Pennsylvania State University University Park PA USA
European Alliance for Personalised Medicine Brussels Belgium
Faculty of Dental Medicine and Health Josip Juraj Strossmayer University of Osijek Osijek Croatia
Faculty of Medicine Josip Juraj Strossmayer University of Osijek Osijek Croatia
Genetics and Personalized Medicine Clinic Tartu University Hospital Tartu Estonia
Hereditary Cancer Program Catalan Institute of Oncology IDIBGI Girona Spain
ICBAS School of Medicine and Biomedical Sciences University of Porto Porto Portugal
INSERM U830 Université Paris Cité Paris France
Institute of Applied Biosciences Centre for Research and Technology Hellas Thessaloniki Greece
Institute of Clinical and Preventive Medicine University of Latvia Riga Latvia
Institute of Genomics Faculty of Science and Technology University of Tartu Tartu Estonia
Institute of Hematology and Blood Transfusion Prague Czech Republic
Institute of Oncology Ljubljana Ljubljana Slovenia
Institute of Pediatrics Faculty of Medicine University of Debrecen Debrecen Hungary
Labdia Labordiagnostik Vienna Austria
Mater Dei Hospital Msida Malta
Medical School REGIOMED Coburg Germany
Medical School University of Rijeka Rijeka Croatia
Medical School University of Split Split Croatia
Ministry for Health Valleta Malta
National Center of Genetics Laboratoire National de Santé Dudelange Luxembourg
Riga East Clinical University Riga Latvia
St Anna Children's Cancer Research Institute Vienna Austria
St Catherine Specialty Hospital Zagreb Croatia
State Research Institute Center for Innovative Medicine Vilnius Lithuania
References provided by Crossref.org
- 000
- 00000naa a2200000 a 4500
- 001
- bmc24019514
- 003
- CZ-PrNML
- 005
- 20241024110817.0
- 007
- ta
- 008
- 241015s2024 enk f 000 0|eng||
- 009
- AR
- 024 7_
- $a 10.1093/eurpub/ckae093 $2 doi
- 035 __
- $a (PubMed)38905592
- 040 __
- $a ABA008 $b cze $d ABA008 $e AACR2
- 041 0_
- $a eng
- 044 __
- $a enk
- 100 1_
- $a McCrary, J Matt $u Department of Human Genetics, Hannover Medical School, Hannover, Germany
- 245 10
- $a Genetic counselling legislation and practice in cancer in EU Member States / $c JM. McCrary, E. Van Valckenborgh, HA. Poirel, R. de Putter, J. van Rooij, D. Horgan, ML. Dierks, O. Antonova, J. Brunet, A. Chirita-Emandi, C. Colas, M. Dalmas, H. Ehrencrona, C. Grima, R. Janavičius, B. Klink, K. Koczok, M. Krajc, B. Lace, L. Leitsalu, M. Mistrik, M. Paneque, D. Primorac, KM. Roetzer, J. Ronez, L. Slámová, E. Spanou, K. Stamatopoulos, T. Stoklosa, S. Strang-Karlsson, K. Szakszon, K. Szczałuba, J. Turner, MF. van Dooren, WAG. van Zelst-Stams, LM. Vassallo, KAW. Wadt, T. Žigman, T. Ripperger, M. Genuardi, M. Van den Bulcke, AK. Bergmann
- 520 9_
- $a 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.
- 650 _2
- $a lidé $7 D006801
- 650 12
- $a Evropská unie $7 D005062
- 650 12
- $a genetické poradenství $x zákonodárství a právo $7 D005817
- 650 12
- $a nádory $x genetika $7 D009369
- 650 _2
- $a genetické testování $x zákonodárství a právo $7 D005820
- 655 _2
- $a časopisecké články $7 D016428
- 700 1_
- $a Van Valckenborgh, Els $u Cancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium
- 700 1_
- $a Poirel, Hélène A $u Cancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium
- 700 1_
- $a de Putter, Robin $u Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium
- 700 1_
- $a van Rooij, Jeroen $u Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands $1 https://orcid.org/000000019754073X
- 700 1_
- $a Horgan, Denis $u European Alliance for Personalised Medicine, Brussels, Belgium
- 700 1_
- $a Dierks, Marie-Luise $u Institute for Epidemiology, Social Medicine, and Health System Research, Hannover Medical School, Hannover, Germany
- 700 1_
- $a Antonova, Olga $u Department of Medical Genetics, Medical University of Sofia, Sofia, Bulgaria
- 700 1_
- $a Brunet, Joan $u Hereditary Cancer Program, Catalan Institute of Oncology, IDIBGI, Girona, Spain $1 https://orcid.org/0000000319453512
- 700 1_
- $a Chirita-Emandi, Adela $u Department of Microscopic Morphology, Genetics Discipline, Center of Genomic Medicine, University of Medicine and Pharmacy "Victor Babes", Timisoara, Romania $u Regional Center of Medical Genetics Timis, Clinical Emergency Hospital for Children "Louis Turcanu", part of ERN ITHACA, Timisoara, Romania
- 700 1_
- $a Colas, Chrystelle $u Département de Génétique, Institut Curie, Paris, France $u INSERM U830, Université Paris Cité, Paris, France
- 700 1_
- $a Dalmas, Miriam $u Ministry for Health, Valleta, Malta $1 https://orcid.org/0000000339136864
- 700 1_
- $a Ehrencrona, Hans $u Department of Clinical Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Region Skane, Lund, Sweden $u Division of Clinical Genetics, Department of Laboratory Medicine, Lund University, Lund, Sweden $1 https://orcid.org/0000000255893622
- 700 1_
- $a Grima, Claire $u Mater Dei Hospital, Msida, Malta
- 700 1_
- $a Janavičius, Ramūnas $u Faculty of Medicine, Department of Human and Medical Genetics, Institute of Biomedical Sciences, Vilnius University, Vilnius, Lithuania $u State Research Institute Center for Innovative Medicine, Vilnius, Lithuania
- 700 1_
- $a Klink, Barbara $u National Center of Genetics, Laboratoire National de Santé, Dudelange, Luxembourg
- 700 1_
- $a Koczok, Katalin $u Department of Laboratory Medicine, University of Debrecen Medical and Health Science Center, Debrecen, Hungary
- 700 1_
- $a Krajc, Mateja $u Institute of Oncology Ljubljana, Ljubljana, Slovenia
- 700 1_
- $a Lace, Baiba $u Riga East Clinical University, Riga, Latvia $u Institute of Clinical and Preventive Medicine, University of Latvia, Riga, Latvia
- 700 1_
- $a Leitsalu, Liis $u Institute of Genomics, Faculty of Science and Technology, University of Tartu, Tartu, Estonia $u Genetics and Personalized Medicine Clinic, Tartu University Hospital, Tartu, Estonia
- 700 1_
- $a Mistrik, Martin $u Department of Medical Genetics, Unilabs, Spišská Nová Ves, Slovakia
- 700 1_
- $a Paneque, Milena $u 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 $u ICBAS-School of Medicine and Biomedical Sciences, University of Porto, Porto, Portugal
- 700 1_
- $a Primorac, Dragan $u St Catherine Specialty Hospital, Zagreb, Croatia $u Medical School, University of Split, Split, Croatia $u Faculty of Medicine, Josip Juraj Strossmayer University of Osijek, Osijek, Croatia $u Faculty of Dental Medicine and Health, Josip Juraj Strossmayer University of Osijek, Osijek, Croatia $u Medical School, University of Rijeka, Rijeka, Croatia $u Medical School REGIOMED, Coburg, Germany $u Eberly College of Science, The Pennsylvania State University, University Park, PA, USA $u The Henry C. Lee College of Criminal Justice and Forensic Sciences, University of New Haven, West Haven, CT, USA $u Department of Paediatrics, University Hospital Center Zagreb and University of Zagreb School of Medicine, Zagreb, Croatia
- 700 1_
- $a Roetzer, Katharina M $u Labdia Labordiagnostik, Vienna, Austria $u St Anna Children's Cancer Research Institute (CCRI), Vienna, Austria
- 700 1_
- $a Ronez, Joelle $u Department of Human Genetics, Hannover Medical School, Hannover, Germany
- 700 1_
- $a Slámová, Lucie $u Institute of Hematology and Blood Transfusion, Prague, Czech Republic
- 700 1_
- $a Spanou, Elena $u Clinical Genetics Department, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus
- 700 1_
- $a Stamatopoulos, Kostas $u Institute of Applied Biosciences, Centre for Research and Technology Hellas, Thessaloniki, Greece
- 700 1_
- $a Stoklosa, Tomasz $u Department of Tumor Biology and Genetics, Medical University of Warsaw, Warsaw, Poland
- 700 1_
- $a Strang-Karlsson, Sonja $u Department of Clinical Genetics, HUS Diagnostic Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland
- 700 1_
- $a Szakszon, Katalin $u Institute of Pediatrics, Faculty of Medicine, University of Debrecen, Debrecen, Hungary
- 700 1_
- $a Szczałuba, Krzysztof $u Department of Medical Genetics, Medical University of Warsaw, Warsaw, Poland
- 700 1_
- $a Turner, Jacqueline $u Clinical Genetics Centre for Ophthalmology, The Mater Misericordiae University Hospital, Dublin, Ireland
- 700 1_
- $a van Dooren, Marieke F $u Department of Clinical Genetics, Erasmus Medical Center, Rotterdam, The Netherlands
- 700 1_
- $a van Zelst-Stams, Wendy A G $u Department of Human Genetics, Radboud University Medical Center, Nijmegen, The Netherlands
- 700 1_
- $a Vassallo, Loredana-Maria $u State Research Institute Center for Innovative Medicine, Vilnius, Lithuania
- 700 1_
- $a Wadt, Karin A W $u Department of Clinical Genetics, University Hospital of Copenhagen, Rigshospitalet, Copenhagen, Denmark $u Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
- 700 1_
- $a Žigman, Tamara $u Department of Paediatrics, University Hospital Center Zagreb and University of Zagreb School of Medicine, Zagreb, Croatia
- 700 1_
- $a Ripperger, Tim $u Department of Human Genetics, Hannover Medical School, Hannover, Germany $1 https://orcid.org/0000000164708612
- 700 1_
- $a Genuardi, Maurizio $u Sezione di Medicina Genomica, Dipartimento di Scienze della Vita e Sanità Pubblica, Università Cattolica del Sacro Cuore, Rome, Italy $u UOC Genetica Medica, Dipartimento di Scienze di Laboratorio e Infettivologiche, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- 700 1_
- $a Van den Bulcke, Marc $u Cancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium
- 700 1_
- $a Bergmann, Anke Katharina $u Department of Human Genetics, Hannover Medical School, Hannover, Germany
- 773 0_
- $w MED00012099 $t European journal of public health $x 1464-360X $g Roč. 34, č. 4 (2024), s. 666-675
- 856 41
- $u https://pubmed.ncbi.nlm.nih.gov/38905592 $y Pubmed
- 910 __
- $a ABA008 $b sig $c sign $y - $z 0
- 990 __
- $a 20241015 $b ABA008
- 991 __
- $a 20241024110811 $b ABA008
- 999 __
- $a ok $b bmc $g 2202002 $s 1231487
- BAS __
- $a 3
- BAS __
- $a PreBMC-MEDLINE
- BMC __
- $a 2024 $b 34 $c 4 $d 666-675 $e 20240801 $i 1464-360X $m European journal of public health $n Eur J Public Health $x MED00012099
- GRA __
- $p CAN.HEAL Consortium
- GRA __
- $a 101080009 $p European Union
- GRA __
- $a P-MIP-22-187 $p Research Council of Lithuania Project
- GRA __
- $a P-MIP-22-187 $p Research Council of Lithuania
- GRA __
- $p AstraZeneca
- LZP __
- $a Pubmed-20241015
