Evidence map›Paper›PMID 42168721›Full record

ArticleHuman genetics2026

Development of a question prompt list to support Consent for Genomic Testing (CoGenT) and research.

Jolyn Hersch, Lauren O'Hara, Phyllis Butow, Mandy Ballinger, Rebekah Laidsaar-Powell, Nicci Bartley, Kirsten McCaffery, Anastasia Latin, Christine Cockburn, Caitlin Delaney and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Human genetics, 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

12 authors.

Jolyn HerschPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia. jolyn.hersch@sydney.edu.au.ORCID http://orcid.org/0000-0001-5225-6639
Lauren O'HaraPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.
Phyllis ButowPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.
Mandy BallingerCentre for Molecular Oncology, School of Biomedical Sciences, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
Rebekah Laidsaar-PowellPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.
Nicci BartleyPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.
Kirsten McCafferySydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Anastasia LatinPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.
Christine CockburnRare Cancers Australia, Bowral, Australia.
Caitlin DelaneyCareFully, Sydney, Australia.
Katherine M TuckerHereditary Cancer Centre, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Sydney, Australia.
Ilona JuraskovaPsycho-Oncology Co-operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

While genomic testing is increasingly utilised to personalise cancer treatment, its complexity creates challenges in achieving informed consent. Partnering with patients, carers, researchers and health professionals, we developed a Question Prompt List (QPL) aiming to support communication and informed consent for tumour profiling and genomic research in oncology. Participants (n = 38) included cancer patients participating (or not) in genomic research, carers, researchers and clinicians. Two rounds of interviews elicited information needs and suggested questions, followed by feedback on the draft QPL and its potential value. We produced concise answers for all questions, edited wording using health literacy principles, and refined according to feedback. The QPL includes 29 items arranged into three sections: Comprehensive Genomic Profiling (CGP), Results of CGP, and About the Genomic Research Study. Participants believed the QPL would empower patients and carers, support clinicians and researchers to engage with patient/family queries, and enable better informed consent in genomic oncology. The Consent in Genomic Testing (CoGenT) Question Prompt List, including evidence-based answers, has been developed rigorously and collaboratively. This simple and flexible tool is perceived as acceptable and useful for patients, carers, clinicians, and research personnel engaging in informed consent for genomic research including tumour profiling.

Indexed as

Genetic TestingInformed ConsentNeoplasmsFemaleGenomicsHumansMaleReturn of Individual Research ResultsSurveys and Questionnaires

Identifiers

PMID42168721
PMCPMC13194191

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.