Evidence map›Paper›PMID 39962063›Full record

ArticleNPJ genomic medicine2025

Returning raw genomic data to research participants in a pediatric cancer precision medicine trial.

Kristine Barlow-Stewart, Eliza Courtney, Mark Cowley, Camron Ebzery, Noemi Fuentes Bolanos, Andrew J Gifford, Hazel Harden, Sarah Josephi-Taylor, Rishi S Kotecha, Marion K Mateos and 18 more

Erratum issuedAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in NPJ genomic medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. 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

5 · Who and what money

Authors and funding

28 authors.

Kristine Barlow-Stewart *Children's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia. kristine.barlowstewart@sydney.edu.au.ORCID http://orcid.org/0000-0003-1831-9944
Eliza Courtney *Children's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Mark CowleyChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.ORCID http://orcid.org/0000-0002-9519-5714
Camron EbzeryGenetic Health Queensland, Royal Brisbane Women's Hospital, Brisbane, QLD, Australia.ORCID http://orcid.org/0000-0003-3487-4542
Noemi Fuentes BolanosChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Andrew J GiffordChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.ORCID http://orcid.org/0000-0002-4092-2347
Hazel HardenAustralian Families 4 Genomics, Brisbane, QLD, Australia.
Sarah Josephi-TaylorClinical Genetics, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Rishi S KotechaDepartment of Clinical Haematology, Oncology, Blood and Marrow Transplantation, Perth Children's Hospital, Perth, WA, Australia.ORCID http://orcid.org/0000-0003-1836-4075
Marion K MateosChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Mitali ManzurChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Chelsea MayohChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Di MilnesGenetic Health Queensland, Royal Brisbane Women's Hospital, Brisbane, QLD, Australia.
Jane NielsenFaculty of Law, University of Tasmania, Hobart, TAS, Australia.
Matthew O'ConnorKids Cancer Centre, Sydney Children's Hospitals Network Randwick, Randwick, NSW, Australia.
Bhavna PadhyeCancer Centre for Children, The Children's Hospital at Westmead, Westmead, NSW, Australia.
Catherine PitmanAustralian Families 4 Genomics, Brisbane, QLD, Australia.
Elizabeth PitmanAustralian Families 4 Genomics, Brisbane, QLD, Australia.
Mark PineseChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Catherine SpeechlyHereditary Cancer Centre, Prince of Wales Hospital Nelune Comprehensive Cancer Centre, Randwick, NSW, Australia.
Ashleigh SullivanChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Toby TrahairChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Katherine TuckerKids Cancer Centre, Sydney Children's Hospitals Network Randwick, Randwick, NSW, Australia.ORCID http://orcid.org/0000-0002-7180-6576
Vanessa TyrrellChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.ORCID http://orcid.org/0000-0002-5162-517X
Meera WarbyChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Andrew WoodStarship Child Health, Auckland, New Zealand.
David S ZieglerChildren's Cancer Institute, Lowy Cancer Research Centre, UNSW, Kensington, NSW, Australia.
Carolyn JohnstonFaculty of Law, University of Tasmania, Hobart, TAS, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

In pediatric cancer precision medicine clinical trials settings, parents proactively seeking treatment and answers to causation may request return of their child's raw data and/or biospecimen. To satisfy such requests, the ZERO Childhood Cancer Program required a guidance document. Literature review led to Version(V)1; Delphi consultation with 21/54 invited experts (V2-4) and parent consultations (V5-6). A final V7 was approved for implementation: Policy (purpose; background; ethical considerations), Process (nine steps), and consent form. Issues addressed included: child's best interests, clinical utility, non-maleficence, reciprocity between researchers and participants/parents; responsibility to genetic relatives; acknowledging potential value of subsequent analysis/interpretation but no obligation on treating clinicians to act on therapeutic recommendations arising; practical barriers to return; and supporting parental empowerment by facilitating meeting with a study genetic counselor, separate from their treating clinician, if preferred, to manage their request. This guide may be a model for other research groups and inform ethical guidelines.

Identifiers

PMID39962063
PMCPMC11832931

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
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 Socratic graph.