利用儿童、青少年和成人的意见开发用于生物银行和研究的多媒体电子同意平台。

IF 1.6 4区 生物学
Iryna Kayda, Ashton Ellis, Vi Nguyen, Holly Longstaff, Elodie Portales-Casamar, Julie M Robillard, Alice Virani, Ashley McKerrow, Michelle Dittrick, George Lei, Suzanne Vercauteren
{"title":"利用儿童、青少年和成人的意见开发用于生物银行和研究的多媒体电子同意平台。","authors":"Iryna Kayda, Ashton Ellis, Vi Nguyen, Holly Longstaff, Elodie Portales-Casamar, Julie M Robillard, Alice Virani, Ashley McKerrow, Michelle Dittrick, George Lei, Suzanne Vercauteren","doi":"10.1089/bio.2024.0165","DOIUrl":null,"url":null,"abstract":"<p><p><b><i>Objective:</i></b> Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children's Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent. <b><i>Study Design:</i></b> A prototype e-consent was developed and end-user opinions regarding content, visuals, user satisfaction, and electronic consent/assent practices were obtained from children, teens, and adults via an online survey and focus groups. A finalized e-consent was submitted for research ethics board (REB) approval. <b><i>Results:</i></b> All age groups rated the description of information, images, and formatting in the e-consent as highly favorable. Teens and adults preferred online (38% and 42%) rather than paper-based (17% and 16%) consent, while children expressed no preference. Majority of children (100%), teens (92%), and adults (98%) agreed or strongly agreed that they understood all the information given during the online consent process. No significant differences were found in survey responses between age groups. Adult and teen focus groups suggested improvements in formatting and addition of features to further clarify terms like \"ongoing donation\" and \"privacy measures.\" All ages preferred the ability to complete the e-consent independently, with optional assistance from research staff. The e-consent received REB approval and was implemented for BCCHB recruitment. <b><i>Conclusion:</i></b> An e-consent was developed and its modality was successfully accepted by end-users from several age groups, including children and teens, for use in pediatric biobanking. This method may potentially improve the process of completing research consent, particularly with adolescents.</p>","PeriodicalId":55358,"journal":{"name":"Biopreservation and Biobanking","volume":" ","pages":""},"PeriodicalIF":1.6000,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children, Teens, and Adults.\",\"authors\":\"Iryna Kayda, Ashton Ellis, Vi Nguyen, Holly Longstaff, Elodie Portales-Casamar, Julie M Robillard, Alice Virani, Ashley McKerrow, Michelle Dittrick, George Lei, Suzanne Vercauteren\",\"doi\":\"10.1089/bio.2024.0165\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b><i>Objective:</i></b> Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children's Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent. <b><i>Study Design:</i></b> A prototype e-consent was developed and end-user opinions regarding content, visuals, user satisfaction, and electronic consent/assent practices were obtained from children, teens, and adults via an online survey and focus groups. A finalized e-consent was submitted for research ethics board (REB) approval. <b><i>Results:</i></b> All age groups rated the description of information, images, and formatting in the e-consent as highly favorable. Teens and adults preferred online (38% and 42%) rather than paper-based (17% and 16%) consent, while children expressed no preference. Majority of children (100%), teens (92%), and adults (98%) agreed or strongly agreed that they understood all the information given during the online consent process. No significant differences were found in survey responses between age groups. Adult and teen focus groups suggested improvements in formatting and addition of features to further clarify terms like \\\"ongoing donation\\\" and \\\"privacy measures.\\\" All ages preferred the ability to complete the e-consent independently, with optional assistance from research staff. The e-consent received REB approval and was implemented for BCCHB recruitment. <b><i>Conclusion:</i></b> An e-consent was developed and its modality was successfully accepted by end-users from several age groups, including children and teens, for use in pediatric biobanking. This method may potentially improve the process of completing research consent, particularly with adolescents.</p>\",\"PeriodicalId\":55358,\"journal\":{\"name\":\"Biopreservation and Biobanking\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2025-07-14\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Biopreservation and Biobanking\",\"FirstCategoryId\":\"99\",\"ListUrlMain\":\"https://doi.org/10.1089/bio.2024.0165\",\"RegionNum\":4,\"RegionCategory\":\"生物学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Biopreservation and Biobanking","FirstCategoryId":"99","ListUrlMain":"https://doi.org/10.1089/bio.2024.0165","RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

摘要

目的:伦理研究招募依赖于有效的知情同意。我们从用户那里寻求反馈和接受关于一个交互式、多媒体、电子同意(e-consent)平台,用于招募BC省儿童医院生物库(BCCHB)的研究参与者。我们的目标是在考虑研究参与和通过电子同意的方式记录同意决定时增强用户体验。研究设计:开发了一个电子同意原型,并通过在线调查和焦点小组从儿童、青少年和成人中获得了关于内容、视觉效果、用户满意度和电子同意/同意实践的最终用户意见。最终的电子同意已提交给研究伦理委员会(REB)批准。结果:各年龄组对电子同意书中的信息描述、图片和格式的评价都很好。青少年和成年人更喜欢在线同意(38%和42%),而不是书面同意(17%和16%),而儿童则没有偏好。大多数儿童(100%)、青少年(92%)和成年人(98%)同意或强烈同意他们理解在线同意过程中提供的所有信息。不同年龄组的调查结果没有显著差异。成人和青少年焦点小组建议改进格式,并增加功能,以进一步澄清“持续捐赠”和“隐私措施”等术语。所有年龄段的人都希望能够独立完成电子同意书,并有研究人员的协助。电子同意书获得REB批准,并在BCCHB招聘中实施。结论:开发了一份电子同意书,其模式成功地被包括儿童和青少年在内的几个年龄组的最终用户接受,用于儿科生物银行。这种方法可能潜在地改善完成研究同意的过程,特别是对青少年。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children, Teens, and Adults.

Objective: Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children's Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent. Study Design: A prototype e-consent was developed and end-user opinions regarding content, visuals, user satisfaction, and electronic consent/assent practices were obtained from children, teens, and adults via an online survey and focus groups. A finalized e-consent was submitted for research ethics board (REB) approval. Results: All age groups rated the description of information, images, and formatting in the e-consent as highly favorable. Teens and adults preferred online (38% and 42%) rather than paper-based (17% and 16%) consent, while children expressed no preference. Majority of children (100%), teens (92%), and adults (98%) agreed or strongly agreed that they understood all the information given during the online consent process. No significant differences were found in survey responses between age groups. Adult and teen focus groups suggested improvements in formatting and addition of features to further clarify terms like "ongoing donation" and "privacy measures." All ages preferred the ability to complete the e-consent independently, with optional assistance from research staff. The e-consent received REB approval and was implemented for BCCHB recruitment. Conclusion: An e-consent was developed and its modality was successfully accepted by end-users from several age groups, including children and teens, for use in pediatric biobanking. This method may potentially improve the process of completing research consent, particularly with adolescents.

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
Biopreservation and Biobanking
Biopreservation and Biobanking Biochemistry, Genetics and Molecular Biology-General Biochemistry,Genetics and Molecular Biology
自引率
12.50%
发文量
114
期刊介绍: Biopreservation and Biobanking is the first journal to provide a unifying forum for the peer-reviewed communication of recent advances in the emerging and evolving field of biospecimen procurement, processing, preservation and banking, distribution, and use. The Journal publishes a range of original articles focusing on current challenges and problems in biopreservation, and advances in methods to address these issues related to the processing of macromolecules, cells, and tissues for research. In a new section dedicated to Emerging Markets and Technologies, the Journal highlights the emergence of new markets and technologies that are either adopting or disrupting the biobank framework as they imprint on society. The solutions presented here are anticipated to help drive innovation within the biobank community. Biopreservation and Biobanking also explores the ethical, legal, and societal considerations surrounding biobanking and biorepository operation. Ideas and practical solutions relevant to improved quality, efficiency, and sustainability of repositories, and relating to their management, operation and oversight are discussed as well.
×
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