In this perspective we want to highlight the rise of what we call “digital phenotyping” or inferring insights about peopleãs health and behavior from their digital devices and data, and the challenges this introduces. Indeed, the collection, processing, and storage of data comes with significant ethical, security and data governance considerations. The COVID-19 pandemic has laid bare the importance of scientific data and modeling, both to understand the nature and spread of the disease, and to develop treatment. But digital devices have also played a (controversial) role, with track and trace systems and increasingly “vaccine passports” being rolled out to help societies open back up. These systems epitomize a wider and longer-standing trend towards seeing almost any form of personal data as potentially health data, especially with the rise of consumer health trackers and other gadgets. Here, we offer an overview of the risks this introduces, drawing on the earlier revolution in genomic sequencing, and propose guidelines to help protect privacy whilst utilizing personal data to help get society back up to speed.

中文翻译：

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数字表型和敏感健康数据：对数据治理的影响


从这个角度来看，我们想强调“数字表型”的兴起，即通过数字设备和数据推断人们的健康和行为，以及由此带来的挑战。事实上，数据的收集、处理和存储伴随着重要的道德、安全和数据治理考虑。 COVID-19 大流行暴露了科学数据和模型的重要性，这既有助于了解疾病的性质和传播，也有助于开发治疗方法。但数字设备也发挥了（有争议的）作用，追踪系统和越来越多的“疫苗护照”被推出，以帮助社会重新开放。这些系统体现了一种更广泛、更长期的趋势，即将几乎任何形式的个人数据视为潜在的健康数据，特别是随着消费者健康追踪器和其他小工具的兴起。在这里，我们借鉴基因组测序的早期革命，概述了这种情况带来的风险，并提出了帮助保护隐私的指南，同时利用个人数据帮助社会恢复正常发展。