Evidence map›Paper›PMID 42667452›Full record

ReviewFamilial cancer2026

The evolution of hereditary cancer genetic counselling: mainstreaming, service redesign and patient experience in Lynch syndrome.

Kelly Kohut, Sarah Cable, Alekhya Ashokan, Stefania Vicari, Hannah Ditchfield, Julie Young, Ben Bux, Fiona Lalloo

Abstract readReview
In one paragraph

Review in Familial cancer, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Kelly KohutDepartment of Clinical and Biomedical Sciences, University of Exeter Medical School, Exeter, UK. k.e.kohut@exeter.ac.uk.ORCID http://orcid.org/0000-0002-9852-2872
Sarah CableCentre for Genomic Medicine, St. George's University Hospitals NHS Foundation Trust, London, UK.
Alekhya AshokanCentre for Genomic Medicine, St. George's University Hospitals NHS Foundation Trust, London, UK.
Stefania VicariDepartment of Communication and Media, Loughborough University, Loughborough, UK.
Hannah DitchfieldDepartment of Communication and Media, Loughborough University, Loughborough, UK.
Julie YoungPatient Representative, London, UK.
Ben BuxPatient Representative, London, UK.
Fiona LallooManchester Centre for Genomic Medicine, St Mary's Hospital Manchester, Manchester, UK.

Funding

Leverhulme Trust RPG-2021-152University of Exeter NIHR Grant/Award Number NIHR203320
6 · The paper itself

Abstract

Genetic counselling for hereditary cancer predisposition has evolved substantially over more than three decades, driven by advances in genomic technologies and the growing use of tumour and germline testing. These developments have expanded access to hereditary cancer testing, treatment and prevention, while also introducing new clinical, psychosocial and system-level challenges. This review examines the transition from traditional specialist-led genetic counselling to mainstreamed testing pathways. Using Lynch syndrome as a paradigm, we explore how service redesign, personalised risk communication and patient experience intersect in contemporary hereditary cancer care. This invited review synthesises clinical, academic and patient perspectives on the evolution of hereditary cancer genetic counselling. Lived experiences of Lynch syndrome were incorporated through patient and public involvement contributors involved in manuscript development and interpretation. Mainstreamed testing has expanded access to genomic information and strengthened opportunities for cascade testing and prevention within families. However, it has also increased testing volumes, complexity of results interpretation and reliance on non-genetics clinicians. As a result, effective care requires close coordination between genetics and cancer services, alongside support for shared decision-making, family communication and psychosocial needs. This review uniquely integrates clinical evidence and lived experience to highlight how mainstreaming has transformed the delivery of hereditary cancer genetic counselling but not the need for specialist genetics expertise. Lynch syndrome illustrates how genomics can be integrated into routine cancer care while maintaining personalised counselling and family-centred follow-up. These principles are relevant across hereditary cancer predispositions and inform the future development of genetic counselling services.

Indexed as

Colorectal Neoplasms, Hereditary NonpolyposisGenetic CounselingGenetic Predisposition to DiseaseGenetic TestingHumansGenetic counsellingGenetic testingLynch syndromeMainstreamingPatient and public involvement (PPI)Shared decision-making

Identifiers

PMID42667452
PMCPMC13526072

What OpenQuestion holds

Textmetadata
Read underepoch 390

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.