Genomic findings with familial implications: agenda setting in light of mainstreamingCentre for Predictive and Preventive Genetics, IBMC – Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal; i3S – Instituto de Investigação e Inovação em Saúde, University of Porto, Porto, Portugal.
Aix Marseille Univ, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l’Information Médicale, ISSPAM, Marseille, France; Université Paris Est Créteil, Créteil, France.
Medical department, Zealand University hospital, Nykøbing Falster, Denmark; Department of people and Technology, Roskilde University, Roskilde, Denmark.
Centre for Human Genetics, University Hospitals Leuven, Leuven, Belgium.
Clinical genetics, Reference Center for Rares Diseases “Intellectual Disabilities”, Rennes University Hospital, Rennes, France.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium; Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Australia; Department of Paediatrics, University of Melbourne, Parkville, Australia.
Wellcome Connecting Science, England, Hinxton, United Kingdom.
Cancer center Sciensano, Brussels, Belgium.
Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Service de Génétique Humaine, CHU de Liège, Liège, Belgium.
Department of Human Genetics, Section Community Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands; Amsterdam Public Health Research Institute, Amsterdam, Netherlands.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium.
CERPOP, UMR 1295, BIOETHICS Team, INSERM, University of Toulouse, Toulouse, France.
PHG Foundation, University of Cambridge, Cambridge, United Kingdom.
Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Flanders, Leuven, Belgium.
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2025 (English)In: Open Research Europe, E-ISSN 2732-5121, Vol. 5, article id 4Article in journal (Refereed) 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.
Place, publisher, year, edition, pages
F1000 Research Ltd , 2025. Vol. 5, article id 4
Keywords [en]
cascade screening, Family communication, genetic counseling, genetic risk, genetic screening, personalized prevention, policy
National Category
Medical Genetics and Genomics
Identifiers
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
2025-04-302025-04-302025-04-30Bibliographically approved