为了更好的糖尿病数据权利:数据保护,数据"所有权",以及制定患者宪章
Ruby Reed-Berendt1,2, Jessica Bell3, Louise Hatherall1
1Birmingham Law School, University of Birmingham, Birmingham, UK.
Diabetic medicine : a journal of the British Diabetic Association
|November 6, 2025
概括
糖尿病患者会产生大量的健康数据. 现有的法律,如通用数据保护条例,提供了一些数据权利,但需要一个更清晰的框架来更好地控制和保护糖尿病数据.
科学领域:
- 医疗信息学 医疗信息学
- 医疗法 法律 医疗法
- 数据治理数据治理
背景情况:
- 在糖尿病护理中越来越多地使用技术,从而产生大量的患者数据.
- 糖尿病患者越来越多地要求更多地访问和控制他们的健康信息.
研究的目的:
- 分析围绕使用和控制糖尿病数据的法律挑战.
- 评估英国和欧盟有关患者数据的现有法律框架.
- 提出解决方案,以加强糖尿病患者的数据权利.
主要方法:
- 对英国和欧盟数据保护法规的法律分析.
- 根据"一般数据保护条例"审查现有的数据主体权利.
- 审查新兴框架和拟议的数据权利宪章.
主要成果:
- 目前英国和欧盟的法律框架缺乏明确的结构来平衡糖尿病数据的利益.
- "数据所有权"的概念与现有的法律结构不太一致,可能无法提供所需的保护.
- 没有充分利用的法律机制,如GDPR数据主体权利,可供糖尿病患者使用.
结论:
- 现有的法律框架不足以充分解决糖尿病数据控制和访问的复杂性.
- 在当前的法律背景下,要求"数据所有权"需要仔细考虑.
- 制定特定的框架,如糖尿病数据权利宪章,可以更好地支持糖尿病患者对其数据的利益.
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