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Genomic findings with familial implications: agenda setting in light of mainstreaming
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium; Department of Clinical and Biomedical Sciences, University of Exeter Medical School, Exeter, United Kingdom.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium; Department of Health, Ethics & Society, Maastricht University GROW, School for Oncology and Reproduction, Limburg, Maastricht, Netherlands.
Department of Sociology, Centre for Sociological Research KU Leuven, Flanders, Leuven, Belgium.
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2025 (Engelska)Ingår i: Open Research Europe, E-ISSN 2732-5121, Vol. 5, artikel-id 4Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

An international workshop was held in Leuven, Belgium, on June 19–20, 2023, to discuss the communication of genetic risk information within families in the context of personalized prevention. Organized as part of the Horizon Europe project PROPHET (PeRsOnalised Prevention roadmap for the future HEalThcare in Europe), the event gathered interdisciplinary stakeholders to explore the benefits and challenges of various policy approaches for returning genetic test results with implications for family members. Five key themes emerged from the discussions: (1) recognizing family communication as an ongoing process, (2) adopting a family-centered approach rather than an individual one, (3) clarifying roles and responsibilities in the communication process, (4) addressing the lack of clear guidelines and policies, and (5) ensuring sufficient resources. To enhance family communication of genetic risk information, participants emphasized the importance of improving pre-test counseling and follow-up procedures, implementing policies to clarify roles and responsibilities, and providing training for healthcare professionals both within and outside genetic services.

Ort, förlag, år, upplaga, sidor
F1000 Research Ltd , 2025. Vol. 5, artikel-id 4
Nyckelord [en]
cascade screening, Family communication, genetic counseling, genetic risk, genetic screening, personalized prevention, policy
Nationell ämneskategori
Medicinsk genetik och genomik
Identifikatorer
URN: urn:nbn:se:umu:diva-238099DOI: 10.12688/openreseurope.19128.1PubMedID: 40212820Scopus ID: 2-s2.0-105002810908OAI: oai:DiVA.org:umu-238099DiVA, id: diva2:1955502
Tillgänglig från: 2025-04-30 Skapad: 2025-04-30 Senast uppdaterad: 2025-04-30Bibliografiskt granskad

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Rosén, Anna

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