Evidence map›Paper›PMID 40247136›Full record

ArticleEuropean journal of human genetics : EJHG2025

Empowering human research ethics committees to review genomics applications: evaluating the utility of a custom online education resource.

Ella McGahan, Jennifer Berkman, David Milne, Bronwyn Terrill, Russell Gear, Susan Gardiner, Lisa Eckstein, Dianne Nicol, Natalie Taylor, Ingrid Winship and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of human genetics : EJHG, 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. Article
  2. Review
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

14 authors.

Ella McGahanFrazer Institute, University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia.ORCID 0009-0005-4671-4900
Jennifer BerkmanFrazer Institute, University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia.
David MilneMetro South Human Research Ethics Committee, Brisbane, QLD, Australia.
Bronwyn TerrillGarvan Institute of Medical Research, University of New South Wales, Sydney, NSW, Australia.
Russell GearMurdoch Children's Research Institute, Melbourne, VIC, Australia.
Susan GardinerMetro South Human Research Ethics Committee, Brisbane, QLD, Australia.
Lisa EcksteinFaculty of Law, University of Tasmania, Hobart, TAS, Australia.
Dianne NicolCentre for Law and Genetics, University of Tasmania, Hobart, TAS, Australia.ORCID 0000-0002-6553-2839
Natalie TaylorFaculty of Medicine and Health, University of New South Wales, Sydney, NSW, Australia.
Ingrid WinshipMurdoch Children's Research Institute, Melbourne, VIC, Australia.
Rebekah McWhirterANU College of Law, Australian National University, Canberra, ACT, Australia.
Amy NisselleMurdoch Children's Research Institute, Melbourne, VIC, Australia.ORCID 0000-0002-8908-5906
Jason LodgeSchool of Education, University of Queensland, Brisbane, QLD, Australia.
Aideen McInerney-LeoFrazer Institute, University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia. a.mcinerney@uq.edu.au.ORCID 0000-0002-0059-5732

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Complex genomic technologies are increasingly utilised in research. However, human research ethics committee (HREC) members lack confidence reviewing genomics applications. This study developed and evaluated the acceptability and utility of an online educational resource on genomics and the ethical considerations for HREC members. Resource development and evaluation was theoretically informed. Qualitative semi-structured interviews with HREC members and subject experts were transcribed and deductively analysed. Participants (n = 29) found the content to be comprehensive, appropriately pitched, and optimal in quantity. Most reported the resource was easy to access and intuitive to navigate. HREC members reported improved confidence in reviewing genomics ethics applications and intentions to re-access as needed. Most (n = 28/29) would recommend to other HREC members, and some volunteered that they would recommend to researchers. Suggested navigation improvements included a progress bar, active learning elements, and a more clearly visible menu. Content suggestions included more detail on data storage/management and considerations when engaging diverse communities. This is the first study to develop and evaluate a genomic educational resource tailored to ethics committees. Following refinement and quantitative evaluation, it is hoped that this resource will increase HREC member confidence in reviewing genomics ethics applications and the quality of researchers' submissions.

Indexed as

Ethics Committees, ResearchGenomicsEthics, ResearchHumansInternet

Identifiers

PMID40247136
PMCPMC12229321

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.