TY - JOUR
T1 - Empowering human research ethics committees to review genomics applications
T2 - evaluating the utility of a custom online education resource
AU - McGahan, Ella
AU - Berkman, Jennifer
AU - Milne, David
AU - Terrill, Bronwyn
AU - Gear, Russell
AU - Gardiner, Susan
AU - Eckstein, Lisa
AU - Nicol, Dianne
AU - Taylor, Natalie
AU - Winship, Ingrid
AU - McWhirter, Rebekah
AU - Nisselle, Amy
AU - Lodge, Jason
AU - McInerney-Leo, Aideen
PY - 2025/7
Y1 - 2025/7
N2 - 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.
AB - 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.
KW - Communities
UR - https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=anu_research_portal_plus2&SrcAuth=WosAPI&KeyUT=WOS:001468965200001&DestLinkType=FullRecord&DestApp=WOS_CPL
UR - https://www.scopus.com/pages/publications/105002737728
U2 - 10.1038/s41431-025-01846-5
DO - 10.1038/s41431-025-01846-5
M3 - Article
C2 - 40247136
SN - 1018-4813
VL - 33
SP - 945
EP - 955
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
ER -