Gilbert Stephen, Baca-Motes Katie, Quer Giorgio, Wiedermann Marc, Brockmann Dirk
Else Kröner Fresenius Center for Digital Health, TUD Dresden University of Technology, Dresden, Germany.
The Scripps Research Institute, La Jolla, CA, USA.
NPJ Digit Med. 2024 Feb 12;7(1):27. doi: 10.1038/s41746-024-01004-z.
Smartphones, smartwatches, linked wearables, and associated wellness apps have had rapid uptake. These tools become ever ‘smarter’ in sensing intimate aspects of our surroundings and physiology over time, including activity, metabolites, electrical signals, blood pressure and oxygenation. Proposed EU law stipulates the ‘involuntary donation’ of depersonalized health and wellness data. There has been pushback against the ever-increasing gathering and sharing of wellness data in this context, increasing with every app purchased or updated. Is the potential of this data now lost to research? Consent-led COVID-19 data donation projects signpost a participative, standardized, and scalable approach to data sharing.
智能手机、智能手表、联网可穿戴设备及相关的健康应用程序已迅速普及。随着时间的推移，这些工具在感知我们周围环境和生理的私密方面变得越来越“智能”，包括活动、代谢物、电信号、血压和氧合情况。欧盟拟议的法律规定了对去个性化的健康和 wellness 数据进行“非自愿捐赠”。在这种情况下，人们对不断增加的健康数据收集和共享产生了抵制，每购买或更新一款应用程序，这种抵制就会加剧。这些数据的潜力现在是否无法用于研究了呢？以同意为导向的 COVID-19 数据捐赠项目为数据共享指明了一种参与性、标准化且可扩展的方法。
