The governance of personal data for COVID-19 response: perspective from the access to COVID-19 tools accelerator

COVID-19 is the world’s first digital pandemic. Digital tools and technologies have been developed to track and trace the spread of the virus, screen for infection, and the pandemic has accelerated the use of digital technology in the delivery of healthcare. The continued development of these tools and technologies, the monitoring of the virus and the development of new tests, treatments and vaccines are dependent on the collection of and access to vast amounts of personal data. This includes clinical data, epidemiological data and public health data that may be collected from laboratories, medical records, wearables and smartphone apps. Previous public health emergencies (PHEs) have demonstrated the importance in making this data available, and early in the COVID-19 pandemic, there were calls for making all kinds of data, including clinical trial data, routine surveillance data, genetic sequencing, and data on the ongoing monitoring of disease control programmes, openly and rapidly available. As part of this, personal data on age, race, sex, health, ethnic group, and socioeconomic factors have been shared. This has helped led to the rapid development of COVID-19 interventions. It has also enabled the better understanding of factors contributing to difference in infection rates and effectiveness of tests, treatments, and vaccines. However, the use of this particularly sensitive data can infringe upon individual and group privacy, increase the risks of individual and group stigma and discrimination, and it may negatively impact already vulnerable, marginalised or minority populations. [...]

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