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

dc.contributor.authorMcGahan, Ellaen
dc.contributor.authorBerkman, Jenniferen
dc.contributor.authorMilne, Daviden
dc.contributor.authorTerrill, Bronwynen
dc.contributor.authorGear, Russellen
dc.contributor.authorGardiner, Susanen
dc.contributor.authorEckstein, Lisaen
dc.contributor.authorNicol, Dianneen
dc.contributor.authorTaylor, Natalieen
dc.contributor.authorWinship, Ingriden
dc.contributor.authorMcWhirter, Rebekahen
dc.contributor.authorNisselle, Amyen
dc.contributor.authorLodge, Jasonen
dc.contributor.authorMcInerney-Leo, Aideenen
dc.date.accessioned2025-12-18T18:40:20Z
dc.date.available2025-12-18T18:40:20Z
dc.date.issued2025-04-17en
dc.description.abstractComplex 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.en
dc.description.sponsorshipWe acknowledge all participants and their respective Australian HRECs for their willingness to participate in this study: Metro South HREC, Bond University HREC, Sydney Children's Hospital HREC, Mater HREC, and Gold Coast HREC. We acknowledge the contributions of both the University of Queensland AV group for filming and Lee Reed for animation development. This research was carried out at the Translational Research Institute (TRI), Woolloongabba, Queensland Australia.en
dc.description.statusPeer-revieweden
dc.format.extent11en
dc.identifier.issn1018-4813en
dc.identifier.otherWOS:001468965200001en
dc.identifier.otherPubMed:40247136en
dc.identifier.otherORCID:/0000-0002-9409-8074/work/188876993en
dc.identifier.scopus105002737728en
dc.identifier.urihttps://hdl.handle.net/1885/733796671
dc.language.isoenen
dc.sourceEuropean Journal of Human Geneticsen
dc.subjectCommunitiesen
dc.titleEmpowering human research ethics committees to review genomics applications: evaluating the utility of a custom online education resourceen
dc.typeJournal articleen
dspace.entity.typePublicationen
local.bibliographicCitation.lastpage955en
local.bibliographicCitation.startpage945en
local.contributor.affiliationMcGahan, Ella; University of Queenslanden
local.contributor.affiliationBerkman, Jennifer; University of Queenslanden
local.contributor.affiliationTerrill, Bronwyn; Garvan Institute of Medical Researchen
local.contributor.affiliationGear, Russell; Murdoch Children's Research Instituteen
local.contributor.affiliationEckstein, Lisa; University of Tasmaniaen
local.contributor.affiliationNicol, Dianne; University of Tasmaniaen
local.contributor.affiliationTaylor, Natalie; University of New South Walesen
local.contributor.affiliationWinship, Ingrid; Murdoch Children's Research Instituteen
local.contributor.affiliationMcWhirter, Rebekah; The Australian National Universityen
local.contributor.affiliationNisselle, Amy; Murdoch Children's Research Instituteen
local.contributor.affiliationLodge, Jason; University of Queenslanden
local.contributor.affiliationMcInerney-Leo, Aideen; University of Queenslanden
local.identifier.citationvolume33en
local.identifier.doi10.1038/s41431-025-01846-5en
local.identifier.puref343a413-0e76-400b-af4a-26fd1fa07dd1en
local.identifier.urlhttps://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=anu_research_portal_plus2&SrcAuth=WosAPI&KeyUT=WOS:001468965200001&DestLinkType=FullRecord&DestApp=WOS_CPLen
local.identifier.urlhttps://www.scopus.com/pages/publications/105002737728en
local.type.statusPublisheden

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