评价CTRL:一个动态同意和参与参与心血管遗传疾病队列中的个人的网络应用程序
Matilda A Haas1,2, Evanthia O Madelli3,4, Rosie Brown3,4
1Australian Genomics, Parkville, VIC, 3052, Australia. matilda.haas@mcri.edu.au.
European journal of human genetics : EJHG
|September 14, 2023
概括
像CTRL这样的动态同意工具在健康研究中是可以接受的,但未得到充分利用. 这项研究强调了对细分同意选项的需求,并为未来的数字同意工具设计提供了信息.
科学领域:
- 基因组研究伦理学
- 医疗信息学 医疗信息学
- 数字健康工具 数字健康工具
背景情况:
- 动态同意正在引起健康研究的兴趣.
- 很少有现实世界的研究评估了它的实施.
- 数字工具为研究同意的细节化,动态的决策提供了潜力.
研究的目的:
- 试点和评估CTRL,这是基因组研究的数字同意工具.
- 评估动态同意工具的采用和决策过程.
- 为改进未来的数字同意工具设计提供信息.
主要方法:
- 使用了前性和后性队列研究设计.
- 邀请参与者注册CTRL数字同意工具.
- 描述性统计数据用于分析人口统计,同意选择和网站分析.
主要成果:
- 九十一个人注册CTRL,占参与者的15.5% (前性) 和11.8% (追溯性).
- 关于二次数据使用和结果返回的细粒度同意选择各不相同.
- 分析表明CTRL是可以接受的,但未得到充分利用;队列之间没有显著的满意度或信任差异.
结论:
- 同意选择的变化支持在研究中需要细致的同意选择.
- 像CTRL这样的数字同意工具是可以接受的,但需要进一步优化.
- 这项研究提供了真实世界的应用和用户参与动态同意技术的见解.
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