Genomic findings with familial implications: agenda setting in light of mainstreaming
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.
Authors
- Anna Rosén (ORCID: https://orcid.org/0000-0003-2441-2395)
- Janneke Kuiper (ORCID: https://orcid.org/0000-0003-3021-6016)
- Amicia Phillips (ORCID: https://orcid.org/0000-0002-4467-685X)
- Laurent Pasquier (ORCID: https://orcid.org/0000-0003-3985-1286)
- Pascal Borry (ORCID: https://orcid.org/0000-0002-4931-9560)
- Emmanuelle Rial‐Sebbag (ORCID: https://orcid.org/0009-0005-3818-0101)
- Eva Van Steijvoort (ORCID: https://orcid.org/0000-0003-3134-4028)
- Eline A.F. Dancet (ORCID: https://orcid.org/0000-0003-0356-930X)
- Colin Mitchell (ORCID: https://orcid.org/0000-0001-9374-6757)
- Álvaro Mendes (ORCID: https://orcid.org/0000-0002-8766-7646)
- Helle Vendel Petersen (ORCID: https://orcid.org/0000-0003-4569-1434)
- Wannes Van Hoof (ORCID: https://orcid.org/0000-0002-0300-9823)
- Hilde Van Esch (ORCID: https://orcid.org/0000-0002-9604-5726)
- Sandrine de Montgolfier (ORCID: https://orcid.org/0000-0002-4216-9379)
- Christine Patch (ORCID: https://orcid.org/0000-0002-4191-0663)
- Danya F. Vears (ORCID: https://orcid.org/0000-0002-6290-545X)
- Carla van El (ORCID: https://orcid.org/0000-0003-2201-2320)
- Maria Siermann (ORCID: https://orcid.org/0000-0002-1289-1512)
- Saskia Bulk (ORCID: https://orcid.org/0009-0002-3763-7964)
- Ainsley J. Newson (ORCID: https://orcid.org/0000-0002-3460-772X)
Institutions
- Roskilde University (DK)
- The University of Sydney (AU)
- Royal Children's Hospital (AU)
- Université Toulouse III - Paul Sabatier (FR)
- Inserm (FR)
- The University of Melbourne (AU)
- Université Fédérale de Toulouse Midi-Pyrénées (FR)
- Université Paris-Est Créteil (FR)
- University of Exeter (GB)
- University of Cambridge (GB)
- Maastricht University (NL)
- Centre de Recherches en Cancérologie de Toulouse (FR)
- Zealand University Hospital (DK)
- VIB-KU Leuven Center for Microbiology (BE)
- PHG Foundation (GB)
- Institut de génétique et de développement de Rennes (FR)
- Centre Hospitalier Universitaire de Liège (BE)
- Wellcome Connecting Science (GB)
- Sciensano (Belgium) (BE)
- Murdoch Children's Research Institute (AU)
- Department of Public Health (MM)
- Institut de Biologie Moléculaire et Cellulaire (FR)
- i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto (PT)
- Economic & Social Sciences, Health Systems & Medical Informatics (FR)
- Institut de Recherche pour le Développement (FR)
- Vrije Universiteit Amsterdam (NL)
- Umeå University (SE)
- KU Leuven (BE)
Publication Details
- Journal
- Open Research Europe
- Published
- 2025-01-10
- DOI
- https://doi.org/10.12688/openreseurope.19128.1
- Citations
- 2
- Primary Topic
- BRCA gene mutations in cancer
- Type
- article
- Field-Weighted Citation Impact
- 3.63
Funders
- European Commission
- KU Leuven
- Kom op tegen Kanker
- HORIZON EUROPE Framework Programme