Evidence map›Paper›PMID 38905592›Full record

ArticleEuropean journal of public health2024

Genetic counselling legislation and practice in cancer in EU Member States.

J Matt McCrary, Els Van Valckenborgh, Hélène A Poirel, Robin de Putter, Jeroen van Rooij, Denis Horgan, Marie-Luise Dierks, Olga Antonova, Joan Brunet, Adela Chirita-Emandi and 32 more

Abstract read
In one paragraph

Article in European journal of public health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed.

  1. Trial
  2. Review
  3. Harmonizing the genetic counselor profession in Europe.European journal of human genetics : EJHG · 2026
    Article
  4. Article
  5. Article
  6. Review
  7. Article
  8. Article
  9. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

42 authors.

J Matt McCraryDepartment of Human Genetics, Hannover Medical School, Hannover, Germany.
Els Van ValckenborghCancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium.
Hélène A PoirelCancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium.
Robin de PutterCenter for Medical Genetics, Ghent University Hospital, Ghent, Belgium.
Jeroen van RooijDepartment of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands.ORCID 0000-0001-9754-073X
Denis HorganEuropean Alliance for Personalised Medicine, Brussels, Belgium.
Marie-Luise DierksInstitute for Epidemiology, Social Medicine, and Health System Research, Hannover Medical School, Hannover, Germany.
Olga AntonovaDepartment of Medical Genetics, Medical University of Sofia, Sofia, Bulgaria.
Joan BrunetHereditary Cancer Program, Catalan Institute of Oncology, IDIBGI, Girona, Spain.ORCID 0000-0003-1945-3512
Adela Chirita-EmandiDepartment of Microscopic Morphology, Genetics Discipline, Center of Genomic Medicine, University of Medicine and Pharmacy "Victor Babes", Timisoara, Romania.
Chrystelle ColasDépartement de Génétique, Institut Curie, Paris, France.
Miriam DalmasMinistry for Health, Valleta, Malta.ORCID 0000-0003-3913-6864
Hans EhrencronaDepartment of Clinical Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Region Skane, Lund, Sweden.ORCID 0000-0002-5589-3622
Claire GrimaMater Dei Hospital, Msida, Malta.
Ramūnas JanavičiusFaculty of Medicine, Department of Human and Medical Genetics, Institute of Biomedical Sciences, Vilnius University, Vilnius, Lithuania.
Barbara KlinkNational Center of Genetics, Laboratoire National de Santé, Dudelange, Luxembourg.
Katalin KoczokDepartment of Laboratory Medicine, University of Debrecen Medical and Health Science Center, Debrecen, Hungary.
Mateja KrajcInstitute of Oncology Ljubljana, Ljubljana, Slovenia.
Baiba LaceRiga East Clinical University, Riga, Latvia.
Liis LeitsaluInstitute of Genomics, Faculty of Science and Technology, University of Tartu, Tartu, Estonia.
Martin MistrikDepartment of Medical Genetics, Unilabs, Spišská Nová Ves, Slovakia.
Milena PanequeCGPP-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.
Dragan PrimoracSt Catherine Specialty Hospital, Zagreb, Croatia.
Katharina M RoetzerLabdia Labordiagnostik, Vienna, Austria.
Joelle RonezDepartment of Human Genetics, Hannover Medical School, Hannover, Germany.
Lucie SlámováInstitute of Hematology and Blood Transfusion, Prague, Czech Republic.
Elena SpanouClinical Genetics Department, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus.
Kostas StamatopoulosInstitute of Applied Biosciences, Centre for Research and Technology Hellas, Thessaloniki, Greece.
Tomasz StoklosaDepartment of Tumor Biology and Genetics, Medical University of Warsaw, Warsaw, Poland.
Sonja Strang-KarlssonDepartment of Clinical Genetics, HUS Diagnostic Center, University of Helsinki and Helsinki University Hospital, Helsinki, Finland.
Katalin SzakszonInstitute of Pediatrics, Faculty of Medicine, University of Debrecen, Debrecen, Hungary.
Krzysztof SzczałubaDepartment of Medical Genetics, Medical University of Warsaw, Warsaw, Poland.
Jacqueline TurnerClinical Genetics Centre for Ophthalmology, The Mater Misericordiae University Hospital, Dublin, Ireland.
Marieke F van DoorenDepartment of Clinical Genetics, Erasmus Medical Center, Rotterdam, The Netherlands.
Wendy A G van Zelst-StamsDepartment of Human Genetics, Radboud University Medical Center, Nijmegen, The Netherlands.
Loredana-Maria VassalloState Research Institute Center for Innovative Medicine, Vilnius, Lithuania.
Karin A W WadtDepartment of Clinical Genetics, University Hospital of Copenhagen, Rigshospitalet, Copenhagen, Denmark.
Tamara ŽigmanDepartment of Paediatrics, University Hospital Center Zagreb and University of Zagreb School of Medicine, Zagreb, Croatia.
Tim RippergerDepartment of Human Genetics, Hannover Medical School, Hannover, Germany.ORCID 0000-0001-6470-8612
Maurizio GenuardiSezione di Medicina Genomica, Dipartimento di Scienze della Vita e Sanità Pubblica, Università Cattolica del Sacro Cuore, Rome, Italy.
Marc Van den BulckeCancer Centre, , Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium.
Anke Katharina BergmannDepartment of Human Genetics, Hannover Medical School, Hannover, Germany.

Funding

Estrogen regulation of osteoclastogenesis in older menR03AG022187 · NIA · UNIVERSITY OF CONNECTICUT SCH OF MED/DNT · PI TAXEL, PAMELA · 2003 to 2003
$73k
AstraZenecaCAN.HEAL ConsortiumEuropean Union 101080009Research Council of Lithuania P-MIP-22-187Research Council of Lithuania Project P-MIP-22-187
6 · The paper itself

Abstract

backgroundSomatic 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.

methodsNational 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.

resultsGenetic 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.

conclusionsThis 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.

Indexed as

European UnionGenetic CounselingNeoplasmsGenetic TestingHumans

Identifiers

PMID38905592
PMCPMC11293827

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.