应用程序的映射:使用mHealth应用程序众包智能手机数据的伦理和法律问题
Nada Farag1, Alycia Noë1, Dimitri Patrinos1
1Centre of Genomics and Policy, McGill University, Montreal, Canada.
Asian bioethics review
|July 18, 2024
概括
移动健康应用程序收集大量用户数据用于研究和算法训练. 不一致和模两可的隐私政策在数据共享和用户同意方面引发了伦理和法律方面的担忧.
科学领域:
- 数字健康数字健康
- 生物伦理学生物伦理学
- 数据科学数据科学数据科学
背景情况:
- 智能手机产生了前所未有的健康数据量.
- 移动健康应用程序 (APP) 越来越多地用于健康数据的收集和处理.
- 这些数据对研究和算法训练有价值,但会带来隐私风险.
研究的目的:
- 探索移动健康应用如何众包用户数据.
- 确定与此数据收集相关的伦理,法律和社会问题 (ELSI).
- 分析有关数据使用的应用程序隐私政策的透明度和内容.
主要方法:
- 检查北美和欧洲的果应用商店和谷歌Play商店.
- 识别可能通过众包收集健康数据的应用程序.
- 分析隐私政策,使用条款和相关文档,用于数据使用和重新使用.
主要成果:
- 在欧洲和加拿大市场确定了46个应用程序,这些应用程序可以众包健康数据或有能力这样做.
- 发现应用程序隐私政策显著缺乏一致性和透明度.
- 在大多数政策中观察到关于与第三方共享数据的模两可或矛盾的语言.
结论:
- 不一致和模两可的隐私政策挑战了用户的理解,信任和知情同意.
- 数据共享实践引发了重大的伦理和法律问题.
- 需要进一步的学术和政策关注,以平衡个人隐私与众包健康数据的科学实用性.
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