Ella McGahan, Jennifer Berkman, David Milne, Bronwyn Terrill, Russell Gear, Susan Gardiner, Lisa Eckstein, Dianne Nicol, Natalie Taylor, Ingrid Winship, Rebekah McWhirter, Amy Nisselle, Jason Lodge, Aideen McInerney-Leo
{"title":"授权人类研究伦理委员会审查基因组学应用:评估自定义在线教育资源的效用。","authors":"Ella McGahan, Jennifer Berkman, David Milne, Bronwyn Terrill, Russell Gear, Susan Gardiner, Lisa Eckstein, Dianne Nicol, Natalie Taylor, Ingrid Winship, Rebekah McWhirter, Amy Nisselle, Jason Lodge, Aideen McInerney-Leo","doi":"10.1038/s41431-025-01846-5","DOIUrl":null,"url":null,"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.","PeriodicalId":12016,"journal":{"name":"European Journal of Human Genetics","volume":"33 7","pages":"945-955"},"PeriodicalIF":4.6000,"publicationDate":"2025-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.nature.com/articles/s41431-025-01846-5.pdf","citationCount":"0","resultStr":"{\"title\":\"Empowering human research ethics committees to review genomics applications: evaluating the utility of a custom online education resource\",\"authors\":\"Ella McGahan, Jennifer Berkman, David Milne, Bronwyn Terrill, Russell Gear, Susan Gardiner, Lisa Eckstein, Dianne Nicol, Natalie Taylor, Ingrid Winship, Rebekah McWhirter, Amy Nisselle, Jason Lodge, Aideen McInerney-Leo\",\"doi\":\"10.1038/s41431-025-01846-5\",\"DOIUrl\":null,\"url\":null,\"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. 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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.
期刊介绍:
The European Journal of Human Genetics is the official journal of the European Society of Human Genetics, publishing high-quality, original research papers, short reports and reviews in the rapidly expanding field of human genetics and genomics. It covers molecular, clinical and cytogenetics, interfacing between advanced biomedical research and the clinician, and bridging the great diversity of facilities, resources and viewpoints in the genetics community.
Key areas include:
-Monogenic and multifactorial disorders
-Development and malformation
-Hereditary cancer
-Medical Genomics
-Gene mapping and functional studies
-Genotype-phenotype correlations
-Genetic variation and genome diversity
-Statistical and computational genetics
-Bioinformatics
-Advances in diagnostics
-Therapy and prevention
-Animal models
-Genetic services
-Community genetics