Patients' and primary care physicians' concerns about digital surveillance of infectious disease in China

To highlight ethical considerations for promoting patients' autonomy and health care rights, researchers from mainland China, Hong Kong and New Zealand present the results of interviews documenting patient and primary care physicians with digital surveillance of infectious disease (including COVID-19) in urban areas of northern and southern China. The authors conducted in-depth interviews with 16 primary care physicians and 24 of their patients, reflecting a range of ages, educational backgrounds and clinical experiences. Ethical approval was granted by the Institutional Review Board of the University of Hong Kong-Shenzhen Hospital in China.

The team identified five frequently mentioned concerns raised by primary care physicians and patients : 1) ambiguity around the need for informed consent about the usage of digital detection surveillance data; 2) the importance of autonomous decision-making; 3) the potential for discrimination with digital detection surveillance of people who have an infectious disease; 4) the risk of social inequity and divided care outcomes; and 5) authoritarian institutions' responsibility for maintaining health data security. The adoption of digital detection surveillance meant some patients would be reluctant to go to a hospital for fear of either being discriminated against or forcibly quarantined. Certain groups such as older people and children were thought to be vulnerable to digital detection surveillance data misuse.

The authors argue that in establishing national and international ethical frameworks for digital detection surveillance that protects patients but allows for coordinated management during pandemics, guidelines should include protections against social inequity.