Empowering human research ethics committees to review genomics applications: evaluating the utility of a custom online education resource
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.
Authors
- Bronwyn Terrill (ORCID: https://orcid.org/0000-0003-0263-363X)
- Dianne Nicol (ORCID: https://orcid.org/0000-0002-6553-2839)
- Susan E. Gardiner (ORCID: https://orcid.org/0000-0002-4884-8743)
- Jennifer L. Berkman (ORCID: https://orcid.org/0000-0002-8079-2452)
- Natalie Taylor (ORCID: https://orcid.org/0000-0002-0280-0883)
- Aideen M McInerney-Leo (ORCID: https://orcid.org/0000-0002-0059-5732)
- Eugene McGahan (ORCID: https://orcid.org/0009-0005-4671-4900)
- Jason M. Lodge (ORCID: https://orcid.org/0000-0001-6330-6160)
- Rebekah McWhirter (ORCID: https://orcid.org/0000-0002-9409-8074)
- Russell Gear (ORCID: https://orcid.org/0000-0001-5378-6746)
- Amy E. Nisselle (ORCID: https://orcid.org/0000-0002-8908-5906)
- Ingrid Winship (ORCID: https://orcid.org/0000-0001-8535-6003)
- Lisa Eckstein (ORCID: https://orcid.org/0000-0002-7161-7521)
- David Milne
Institutions
- Australian National University (AU)
- University of Tasmania (AU)
- The Royal Melbourne Hospital (AU)
- Garvan Institute of Medical Research (AU)
- The University of Queensland (AU)
- The University of Melbourne (AU)
- UNSW Sydney (AU)
- Metro South Health (AU)
- Cancer Council SA (AU)
- Murdoch Children's Research Institute (AU)
Publication Details
- Journal
- European Journal of Human Genetics
- Published
- 2025-04-17
- DOI
- https://doi.org/10.1038/s41431-025-01846-5
- Citations
- 3
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 5.64
Funders
- Australian Government
- Bond University