Global Perspectives on Data Collection, Contact Tracing, and COVID-19
Network of Centers discussion focuses on uses of data to combat COVID-19
Current responses to the novel coronavirus (COVID-19) are largely focused on national scales, exacerbated by the closing of borders and heightened travel restrictions in an effort to contain the virus. As part of these national responses, countries and governments — as well as private and nonprofit players within these locales — are exploring the use of data and apps to help prevent the spread of the virus and identify carriers. By attempting to digitize contact tracing, or using data to determine the places and people with whom an individual may have contracted COVID-19, a wealth of legal and privacy concerns arise. These data are derived from a range of sources, such as self-reported surveys, wearables, and public health studies, all of which come with a host of specific challenges in this vein.
The Network of Internet and Society Centers (NoC) held a virtual event to explore the different legal, political, and public health responses to COVID-19 around the world, with an emphasis on these various ways countries are using data to track the spread and the corresponding implications. Panelists included interdisciplinary experts from Boston, Singapore, South Korea, Israel, and Brazil.
The event, hosted by the Institute for Technology and Society of Rio de Janeiro (ITS Rio) with support from the Berkman Klein Center, follows an earlier conversation with Yves Daccord and other experts from around the world on nascent experiences of COVID-19. The goal of these conversations is to leverage the expertise of an existing global network in order to understand varying country responses — with a focus on the use of digital technologies — and identify areas to collaborate during the current pandemic.
The state(s) of play around the world
In order to get a sense of the different environments and happenings around the world, the discussion began with a few brief highlights from panelists to set the stage.
Leo Celi is on the front lines of the COVID-19 pandemic in Boston. A Staff Physician at Beth Israel Deaconess Medical Center, Principal Research Scientist at the Massachusetts Institute of Technology, and Clinical Research Director of MIT’s Laboratory for Computational Physiology, Celi spoke of his experience in the hospital and provided an overview of the responses and challenges he is facing at Beth Israel Deaconess Medical Center. Celi emphasized the need for mass testing, especially for healthcare workers, all patients (including asymptomatic individuals), and vulnerable populations like individuals in nursing homes, homeless shelters, and jails and prisons. He also discussed the importance of technology and data, for data modeling and contact tracing, noting that researchers around the world should join forces and share data to best understand the virus and its spread.
Across the globe in Singapore, Malavika Jayaram, the Executive Director of Digital Asia Hub, said that although the country was initially lauded for its response to COVID-19, it is now facing another increase in cases. Singapore currently has “two different pandemics in place at the same time,” one that’s well controlled, affecting most of the population, and one that disproportionately affects migrant workers due to structural and socioeconomic inequalities. Jayaram noted, for example, that “social distancing is a privileged idea,” and that Singapore is now struggling more with COVID-19 because many migrant workers are living in crowded and unsanitary spaces. Jayaram also spoke about the TraceTogether app created and deployed in Singapore, which has served as a model for similar apps worldwide. It claims to be a ‘privacy first’ app that stores location data on the phone rather than on a server, and is never decrypted. Similar to other apps created for this purpose, experts are interrogating the app’s privacy claims, and have urged greater transparency and auditability (especially of the source code, not just the protocol).
South Korea, like Singapore, has implemented mass testing and maintains a low case fatality rate, according to KS Park, one of the founders of Open Net Korea. Following the MERS outbreak (a disease also in the coronavirus family) in 2015, Park explained that the South Korean government approved using location data to track patients using information from third parties, such as telecommunications operators and credit card companies, according to the Infectious Disease and Prevention Act. He pointed out that there is no judicial oversight for the data collected, highlighting potential privacy infringements. Park also described his perspective of COVID-19 as a “civilization changing” experience that will force people to decide “where to draw the line between safety and personal privacy.” With MERS, South Korea got a head start on thinking through these questions, and the answers to these questions are being tested now.
In Israel, there are multiple approaches to tracking data, explained Eldar Haber, an Associate Professor at the University of Haifa. One approach used at the beginning of the pandemic was simply to publicly report the routes of known patients, without disclosing their identity. There are obvious challenges with fully anonymizing such data, however, as well as scaling up this method for the entire population, and thus it was generally ceased as a practice. A separate tracking approach uses location data (along with other metadata) obtained from cell phones, regularly collected by the internal security agency (known by its Hebrew acronym as the “Shin Bet”) for anti-terrorism purposes, to notify those that were likely to be infected by COVID-19 due to proximity to known patients. This approach raised many concerns from civil rights activists and academics, Eldar said, and is currently under legal scrutiny by the Supreme Court. Lastly, Eldar discussed an app called Hamagen, “The Shield,” created by the Ministry of Health, which is a voluntary (and, thereby, consensual) way for people to track location and possible points of contact with those infected with the virus. Similarly to the TraceTogether app in Singapore, The Shield app embeds privacy-by-design principles, and it is open source, but still faces similar criticism to other such apps. Its use also raises concerns about fear around the virus yielding widespread surveillance that could last beyond the pandemic.
In Brazil, using data to combat COVID-19 is a contested and political topic, said Carlos Affonso Souza of ITS Rio, adding that COVID-19 has led to a political fight around the usage of personal data to track the spread of the virus. For example, at the federal level, the Science and Technology minister announced that they would start using data from telecommunications companies, but President Bolsonaro halted this effort due to privacy concerns. Souza also said that although Brazil went into quarantine before the U.S., they don’t have a good grasp on the pandemic, and he is concerned that Brazil is pushing to return to “normal” too quickly.
Celi, the physician from Boston and MIT, provided closing remarks, noting that while many efforts involve “anonymizing” data, it’s impossible to completely de-identify data and there are risks to doing so. He called for transparency in the technology and apps created for COVID-19 and concluded by stressing, “people will need to give up some privacy to end this pandemic,” but that in order for it to end, “people need to trust in their leaders and scientific experts.”
Pulling it all together
Following the panelists’ initial inputs, Urs Gasser, the Executive Director of the Berkman Klein Center, is working on data and COVID-19-related issues and asked panelists for their thoughts on what will happen once international travel resumes and data flows become international again.
Jayaram underscored that apps like TraceTogether have been designed with interoperability across jurisdictions in mind, but questions of national sovereignty as well as data sovereignty are nuanced and complex. Haber noted that it will take time to fully understand the ramifications of the virus, and added that it’s important to consider measures that are proportionate and respect privacy in terms of human rights and dignity.
Souza proposed a mode of international coordination, noting that many countries have taken to closing borders for public health protection in initial crisis mode, but that in the long-term, maintaining a specifically national emphasis prevents countries from seeing the larger picture which is needed to combat the virus globally.