In late January and early February, a study of influenza had the ability to reveal whether subjects in the Seattle area were infected by the novel coronavirus. But medical privacy rules scuttled the idea until researchers, on February 25, decided to go ahead and test anyway. They discovered that COVID-19 had already contributed to the deaths of two people.
In China, Singapore, and Israel, government officials used citizens' cell phones to track who may have had contact with infected individuals, a capability the European Union is considering as well. Market intelligence service Unacast has used its system of tracking citizens — originally to determine mobile users' music preferences — to produce scorecards of how well the citizens of nations, regions, and cities were social distancing to reduce spread.
The different ways that nations approach the problem of the coronavirus pandemic often conflicts with privacy rights, says Omer Tene, vice president and chief knowledge officer at the International Association of Privacy Professional (IAPP).
"There is a balance between the usefulness and effectiveness of measures and the ability to protect privacy and civil liberties, and China weighed in very heavily on one side," he says. "They sacrificed privacy and civil liberties — of course, they did not have much to begin with — to reinforce the public health interest. The US will have to find its own place on the scale."
Natural and human disasters typically redraw the lines between civil liberties and security. Following the September 11 terrorist attacks, the US government curtailed many privacy provisions to try to enhance security. Most experts, in hindsight, believe the government went too far, and some of the privacy protections have been restored.
The rush to find ways to use technology to combat COVID-19 has given governments visibility into the spread of the novel coronavirus but will likely result in citizens sacrificing privacy — at least for the time being. The pandemic poses a different threat, one that could have a lasting impact on medical and personal privacy, according to Cindy Cohn, executive director of the Electronic Frontier Foundation (EFF).
"We must be sure that measures taken in the name of responding to COVID-19 are, in the language of international human rights law, 'necessary and proportionate' to the needs of society in fighting the virus," she said in a post. "Above all, we must make sure that these measures end and that the data collected for these purposes is not repurposed for either governmental or commercial ends.
Yet privacy rules have arguably delayed the response to the coronavirus pandemic. The Seattle Flu Study, for example, had already been surveilling influenza infection rates in the city when researchers heard of the spread of the novel coronavirus. The medical researchers offered in late January to start testing for coronavirus, but medical privacy and ethics rules prevented them from extending the effort beyond its original scope and notifying participants of their status, according to The New York Times, which broke the story.
The researchers eventually expanded testing on their own initiative weeks later and were shut down by state officials, but not before confirming that the disease had spread to the Seattle area. On March 22, the group got permission to restart testing and was retasked as the Seattle Coronavirus Assessment Network, or SCAN.
"Everyone who takes part in this effort will help us understand how coronavirus is spreading in the Greater Seattle area," the group now states on its website. "We are increasing capacity and responding to public health priorities as they come up."
Market intelligence firm Unacast has used its ability to track mobile users to create scorecards for the social-distancing efforts of citizens of different regions. The commonwealth of Massachusetts, for example, gets an "A" for its efforts, while Hawaii garnered a "D" grade.
Efforts to monitor potential infected citizens will likely run afoul of privacy rules but can pay dividends, says Ambuj Kumar, Fortanix CEO and co-founder of encryption firm Fortanix. He points to two apps that show the possibilities if privacy issues are resolved: One is China's Alipay Health Code app, which tracks citizen movements and uses a color code to restrict the movement of people as a more authoritarian solution. Singapore used a different app, TraceTogether, which records movements within two meters of other people to determine whether people were exposed to the virus.
New techniques, such as privacy-preserving data analysis, could allow extremely private data to be tracked from multiple sources without exposing an individual’s private data.
"It’s unlikely that more open democracies with established privacy laws will be able to implement similar systems without additional privacy protections," he says.
The EFF has warned that in fighting the epidemic technologists should consider the privacy consequences.
We need to "make sure that we both take advantage of how technology can help us now and, equally importantly, that we emerge from this time with our freedom and democracy as strong, if not stronger, than when we went in," the EFF's Cohn said, adding that "we also need to be vigilant so that we come out the other side of this crisis with a society we want to live in and hand down to our kids. We can — and must — do both."
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