在安全的手中:儿童健康数据的存储,链接和同意使用
Cervantée E K Wild1,2, Ngauru T Rawiri1,3,4, Ken Taiapa5
1Department of Paediatrics: Child and Youth Health, School of Medicine, University of Auckland, Auckland, New Zealand.
Health promotion international
|December 6, 2023
概括
儿童和年轻人希望被视为个人,而不仅仅是数据点. 他们对健康数据存储和同意的看法强调信任和持续的沟通,强调需要道德数据管理,以防止健康不平等.
科学领域:
- 公共卫生 公共卫生
- 生物伦理学生物伦理学
- 医疗信息学 医疗信息学
背景情况:
- 整合大型健康数据集存在社会利益.
- 缺乏对儿童和青少年及其视角的影响的理解.
- 目前关于健康数据链接和同意的话语不充分包括年轻人的声音.
研究的目的:
- 探索新西兰奥特亚罗亚的儿童,年轻人及其家庭的观点和期望.
- 调查关于儿童健康数据存储,链接和数据使用同意的观点.
主要方法:
- 24名毛利和非毛利儿童,青年和家庭的定性研究.
- 五个重点小组在社区医疗服务中进行了调查.
- 专题分析与儿童,青少年和家长/照顾者分别组的音频录制的会议.
主要成果:
- 确定了三个关键主题:"将患者视为人"",数据作为力量"",同意作为积极的关系".
- 数据整合给少数群体带来了减少和污名化的风险.
- 对卫生专业人员的信任和谈判数据所有权对于数据共享讨论至关重要.
- 同意被视为一个持续的,可以重新谈判的关系,特别是当孩子成熟时.
结论:
- 目前对儿童健康数据的同意流程需要重新评估.
- 基于儿童权利的伦理方法对于数据管理,同意和链接至关重要.
- 如果不采取这种方法,可能会加剧健康不平等和信任损失.
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