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。

IF 4.6 2区 生物学 Q2 BIOCHEMISTRY & MOLECULAR BIOLOGY
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. 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\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European Journal of Human Genetics\",\"FirstCategoryId\":\"99\",\"ListUrlMain\":\"https://www.nature.com/articles/s41431-025-01846-5\",\"RegionNum\":2,\"RegionCategory\":\"生物学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"BIOCHEMISTRY & MOLECULAR BIOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Human Genetics","FirstCategoryId":"99","ListUrlMain":"https://www.nature.com/articles/s41431-025-01846-5","RegionNum":2,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BIOCHEMISTRY & MOLECULAR BIOLOGY","Score":null,"Total":0}
引用次数: 0

摘要

复杂的基因组技术越来越多地应用于研究。然而,人类研究伦理委员会(HREC)成员缺乏审查基因组学应用的信心。本研究开发并评估了基因组学在线教育资源的可接受性和效用,以及HREC成员的伦理考虑。资源开发和评价在理论上是知情的。对HREC成员和主题专家的定性半结构化访谈进行转录和演绎分析。参与者(n = 29)发现内容全面,定位适当,数量最佳。大多数人报告说,该资源易于访问和直观导航。HREC成员报告说,在审查基因组学伦理应用方面的信心有所提高,并有必要重新访问的意图。大多数人(n = 28/29)会推荐给其他HREC成员,一些人自愿推荐给研究人员。建议的导航改进包括进度条、主动学习元素和更清晰可见的菜单。内容建议包括更多关于数据存储/管理的细节,以及参与不同社区时的注意事项。这是第一个开发和评估为伦理委员会量身定制的基因组教育资源的研究。经过改进和定量评估,希望该资源将增加HREC成员在审查基因组学伦理应用和研究人员提交的质量方面的信心。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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

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.
求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
European Journal of Human Genetics
European Journal of Human Genetics 生物-生化与分子生物学
CiteScore
9.90
自引率
5.80%
发文量
216
审稿时长
2 months
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
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信