Gilbert Gwendolyn L, Degeling Chris, Johnson Jane
1Marie Bashir Institute for Infectious Diseases and Biosecurity, University of Sydney, Sydney, Australia.
2Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
Asian Bioeth Rev. 2019;11(2):173-187. doi: 10.1007/s41649-019-00087-1. Epub 2019 Jun 10.
Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected (notifiable) infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data-based electronic surveillance, by commercial bodies and government agencies (for profit or population control), which draws on a plethora of internet- and mobile device-based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain syndromic information, which can be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events-including exotic or emerging infections-even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory (including pathogen genomic) records and the potential to (confidentially) re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control. Despite existing widespread digital surveillance and major potential community benefits of extending its use to communicable disease control, there is considerable public disquiet about allowing public health authorities access to personal health data. Informed public discussion, greater transparency and an ethical framework will be essential to build public trust in the use of new technology for communicable disease control.
监测对于传染病的预防和控制至关重要。传统的对特定（应报告）传染病患者的人口统计学和临床信息进行报告，能使公共卫生部门采取适当行动，且受到公共卫生和隐私立法的保护，但这种方式缓慢且不敏感。商业机构和政府机构（出于盈利或人口控制目的）基于大数据的电子监测，利用了大量基于互联网和移动设备的数据源，即便并非得到普遍欢迎，也已被广泛接受。类似的匿名数字来源还包含症状信息，可通过定制算法进行分析，以快速预测传染病爆发，但数据不具特异性，预测有时会产生误导。然而，公共卫生当局可将这些在线来源与经过去标识化处理的个人健康数据相结合，以便在病因确诊之前，就对包括外来或新出现感染在内的传染病事件提供更准确、更早期的预警，并实现更及时的公共卫生干预。要实现最佳效益，需要获取个人电子健康记录和实验室（包括病原体基因组）记录中的特定数据，并具备（保密地）重新识别参与疫情爆发者身份的能力，以确保提供适当的护理和感染控制。尽管现已有广泛的数字监测，且将其应用扩展至传染病控制具有重大潜在的社区效益，但公众对于允许公共卫生当局获取个人健康数据仍存在相当大的不安。开展有见地的公众讨论、提高透明度以及建立一个道德框架，对于建立公众对利用新技术进行传染病控制的信任至关重要。
