Evidence map›Paper›PMID 40212820›Full record

ArticleOpen research Europe2025

Genomic findings with familial implications: agenda setting in light of mainstreaming.

Amicia Phillips, Eva Van Steijvoort, Maria Siermann, Janneke M L Kuiper, Álvaro Mendes, Sandrine de Montgolfier, Helle Vendel Petersen, Anna Rosén, Hilde Van Esch, Laurent Pasquier and 10 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Open research Europe, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. 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

20 authors.

Amicia PhillipsDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.
Eva Van SteijvoortDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.ORCID https://orcid.org/0000-0003-3134-4028
Maria SiermannDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.ORCID https://orcid.org/0000-0002-1289-1512
Janneke M L KuiperDepartment of Sociology, Centre for Sociological Research KU Leuven, Leuven, Flanders, 3000, Belgium.ORCID https://orcid.org/0000-0003-3021-6016
Álvaro MendesCentre for Predictive and Preventive Genetics, IBMC - Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal.ORCID https://orcid.org/0000-0002-8766-7646
Sandrine de MontgolfierAix Marseille Univ, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, ISSPAM, Marseille, France.ORCID https://orcid.org/0000-0002-4216-9379
Helle Vendel PetersenMedical department, Zealand University hospital, Nykøbing Falster, Denmark.ORCID https://orcid.org/0000-0003-4569-1434
Anna RosénDepartment of Diagnostics and Intervention, Unit of oncology, Umeå University, Umeå, Sweden.
Hilde Van EschCentre for Human Genetics, University Hospitals Leuven, Leuven, Belgium.
Laurent PasquierClinical genetics, Reference Center for Rares Diseases "Intellectual Disabilities", Rennes University Hospital, Rennes, France.
Danya F VearsDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.
Christine PatchWellcome Connecting Science, Hinxton, England, UK.
Wannes Van HoofCancer center Sciensano, Brussels, Belgium.
Ainsley J NewsonSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.ORCID https://orcid.org/0000-0002-3460-772X
Saskia BulkService de Génétique Humaine, CHU de Liège, Liège, 4000, Belgium.
Carla van ElDepartment of Human Genetics, Section Community Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Eline DancetDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.
Emmanuelle Rial-SebbagCERPOP, UMR 1295, BIOETHICS Team, INSERM, University of Toulouse, Toulouse, France.
Colin MitchellPHG Foundation, University of Cambridge, Cambridge, UK.
Pascal BorryDepartment of Public Health and Primary Care, Centre for Biomedical Ethics and Law KU Leuven, Leuven, Flanders, 3000, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

cascade screeningFamily communicationgenetic counselinggenetic riskgenetic screeningpersonalized preventionpolicy

Identifiers

PMID40212820
PMCPMC11982804

What OpenQuestion holds

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Registered trials

None linked

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.