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

Publisher: Oxford University Press Country of Publication: England NLM ID: 9204966 Publication Model: Print Cited Medium: Internet ISSN: 1464-360X (Electronic) Linking ISSN: 11011262 NLM ISO Abbreviation: Eur J Public Health Subsets: MEDLINE

Publication: Oxford : Oxford University Press
Original Publication: Stockholm, Sweden : Almqvist & Wiksell International, c1991-

European Union* ; Genetic Counseling*/legislation & jurisprudence ; Neoplasms*/genetics; Humans ; Genetic Testing/legislation & jurisprudence

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.
(© The Author(s) 2024. Published by Oxford University Press on behalf of the European Public Health Association.)

Hered Cancer Clin Pract. 2019 Jan 11;17:2. (PMID: 30651894)
Eur J Hum Genet. 2008 Oct;16(10):1208-16. (PMID: 18478036)
BMC Health Serv Res. 2022 Jun 21;22(1):805. (PMID: 35729592)
Health Policy. 2021 Jul;125(7):877-887. (PMID: 33962789)
Genet Med. 2006 Jan;8(1):24-32. (PMID: 16418596)
Cell. 2018 Apr 5;173(2):305-320.e10. (PMID: 29625049)
J Genet Couns. 2018 Apr;27(2):381-391. (PMID: 29512060)
Eur J Hum Genet. 2014 Jul;22(7):866-74. (PMID: 24253862)
Eur J Hum Genet. 2016 Apr;24(4):513-20. (PMID: 26173963)
JAMA Intern Med. 2014 Feb 1;174(2):275-80. (PMID: 24217348)
Eur J Health Law. 2008 Dec;15(4):441-50. (PMID: 19180986)
J Genet Couns. 2014 Feb;23(1):48-63. (PMID: 23754506)
J Community Genet. 2021 Jan;12(1):91-99. (PMID: 33319336)
Am J Hum Genet. 2022 Dec 1;109(12):2141-2151. (PMID: 36417915)
Genet Med. 2020 Sep;22(9):1437-1449. (PMID: 32576987)
Eur J Hum Genet. 2019 Feb;27(2):183-197. (PMID: 30291341)
Eur J Cancer. 2021 Nov;157:308-347. (PMID: 34560371)
J Intern Med. 2023 Oct;294(4):437-454. (PMID: 37455247)
J Genet Couns. 2006 Apr;15(2):77-83. (PMID: 16761103)

CAN.HEAL Consortium; 101080009 European Union; P-MIP-22-187 Research Council of Lithuania Project; P-MIP-22-187 Research Council of Lithuania; AstraZeneca

Date Created: 20240621 Date Completed: 20240801 Latest Revision: 20240803

20240803

PMC11293827

10.1093/eurpub/ckae093

38905592