McGahan Ella, Berkman Jennifer, Milne David, Terrill Bronwyn, Gear Russell, Gardiner Susan, Eckstein Lisa, Nicol Dianne, Taylor Natalie, Winship Ingrid, McWhirter Rebekah, Nisselle Amy, Lodge Jason, McInerney-Leo Aideen
Frazer Institute, University of Queensland, Dermatology Research Centre, Brisbane, QLD, Australia.
Metro South Human Research Ethics Committee, Brisbane, QLD, Australia.
Eur J Hum Genet. 2025 Apr 17. doi: 10.1038/s41431-025-01846-5.
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.
复杂的基因组技术在研究中得到越来越广泛的应用。然而，人类研究伦理委员会（HREC）的成员在审查基因组学应用方面缺乏信心。本研究开发并评估了一种针对HREC成员的关于基因组学及伦理考量的在线教育资源的可接受性和实用性。资源的开发和评估以理论为依据。对HREC成员和主题专家进行的定性半结构化访谈进行了转录并进行了演绎分析。参与者（n = 29）发现内容全面、难度适中且数量恰到好处。大多数人表示该资源易于获取且导航直观。HREC成员报告称，在审查基因组学伦理应用方面的信心有所增强，并有根据需要再次访问该资源的意愿。大多数人（n = 28/29）会向其他HREC成员推荐该资源，一些人还自愿表示会向研究人员推荐。建议的导航改进包括进度条、主动学习元素以及更清晰可见的菜单。内容方面的建议包括关于数据存储/管理的更多细节以及在接触不同群体时的考量。这是第一项开发并评估针对伦理委员会量身定制的基因组学教育资源的研究。经过完善和定量评估后，希望该资源将增强HREC成员在审查基因组学伦理应用方面的信心，并提高研究人员提交材料的质量。
