By Gopal Ratnam CQ-Roll Call
WWR Article Summary (tl;dr) With no federal law in place governing data privacy, some are deeply concerned about potential violations that could occur with some of the tracking apps that are being developed to battle COVID-19.
Technology companies and experts are coming up with a variety of new methods, applications and tools to track the spread of COVID-19 in the United States, systems that could greatly help government plan and cope with the novel coronavirus.
But these new monitoring systems are leaving lawmakers and privacy experts worried that the result could be widespread surveillance of the health data and private movements of Americans with no federal law in place governing data privacy.
The need for technology solutions not only to gauge the spread of the disease but also to identify and isolate the infected are fairly self-evident.
The ideas and proposals for the use of new technologies range from systems that would draw data from diagnostic testing labs and hospitals to mobile phone-based apps that individuals would download voluntarily to identify themselves as infected to help others avoid contact.
Some of these new systems, experts say, could help bring the economy back faster. President Donald Trump has repeatedly sought to lift federal restrictions on social gatherings and reopen the U.S. economy. But public health officials have warned that resuming normal activities too soon could be dangerous and lead to new outbreaks.
By Thursday, at least 131,000 people had died from the coronavirus pandemic worldwide, as known infections exceeded 2 million. In the United States, deaths from the virus exceeded 28,000, with known infections totaling nearly 637,000.
In the absence of a nationwide surveillance, monitoring and containment system, it would be hard to resume normal economic activity in the United States, a group of health experts warned in a paper published last week.
"Developing these capabilities in each state and region will enable the U.S. to move beyond extreme and disruptive physical isolation measures," according to the paper authored by Mark McClellan, Scott Gottlieb, Farzad Mostashari, Caitlin Rivers and Lauren Silvis. The paper was published by the Duke University's Margolis Center for Health Policy, and the authors are public health experts from different institutions.
Gottlieb is a former commissioner of the U.S. Food and Drug Administration and has been advising the Trump administration in an informal capacity. Establishing a national surveillance system would require "ongoing coordination between health care providers and state and local public health authorities," with support from the Centers for Disease Control and Prevention, the authors wrote.
The authors called for a national monitoring system with the capability to track and trace outbreaks; widespread testing for everyone with symptoms; widespread testing to identify those with immunity; an expansion of the existing National Syndromic Surveillance System managed by the CDC with new information on the pandemic; and a rapid response capacity to identify, isolate and do contact tracing of new cases.
White House senior adviser Jared Kushner is discussing with tech companies the creation of a national surveillance system to give the federal government a clear view of infections, patients seeking treatment and hospital capacity, Politico reported last week citing unnamed officials.
Although it's likely that the Kushner effort is aimed at creating a system like the one recommended by Gottlieb and others, the report led Democratic lawmakers including Sens. Mark Warner, D-Va., Richard Blumenthal, D-Conn., and Rep. Anna G. Eshoo, D-Calif., to write to Kushner about the secrecy surrounding his effort and how it might affect Americans' privacy.
"While we support greater efforts to track and combat the spread of COVID-19, and have been alarmed by the notably delayed response to the crisis by this Administration, we have serious concerns with the secrecy of these efforts and their impact on the health privacy of all Americans," the lawmakers wrote on Friday. "Your office's denial of the existence of this effort, despite ample corroborating reporting, only compounds concerns we have with lack of transparency."
The Senate Commerce Committee, trying to get its arms around the issue, last week invited panelists to submit their testimonies on how big data can be enlisted to combat the pandemic.
"The potential benefits of big data to help contain the virus and limit future outbreaks could be significant," Sen. Roger Wicker, R-Miss., chairman of the committee, said in a statement. "To maximize these benefits, however, privacy risks to consumers will need to be minimized."
That means understanding how data is collected and whether it's sufficiently "anonymized to remove all personally identifiable information and prevent individuals from being re-identified," he said.
Sen. Ron Wyden, D-Ore., who has championed privacy rights and argued against government surveillance, said information shared by private companies with government entities must be closely examined.
"Our public health agencies should use the best tools available to slow the spread of this epidemic, but an emergency can't be an excuse to violate Americans' rights," Wyden said in an email to CQ Roll Call. "It may be appropriate for companies to share some information with the government, but only if there is full transparency about what data is being shared, assurances it will never be used by law enforcement, and with strict protections in place to protect Americans' information against abuse."
The term "surveillance" used in the context of a pandemic is different from its everyday use, which often connotes illegal eavesdropping and causes confusion, said William Staples, a sociology professor at the University of Kansas and director of its Surveillance Studies Research Center. Health experts often use the term surveillance "in the sense of keeping an eye on" a disease, Staples told CQ Roll Call.
Nevertheless, technologies rushed into use in the midst of a public health crisis without adequate policy reviews, public hearings and other assessments could have downsides, Staples said. "We don't know whether it works or not, we haven't answered the question of who controls the data, who has access to it."
The goal of such questions isn't to stop applications of technology but to pause and ask how to prevent their misuse, Staples said. "Two or six years after a crisis, would the technologies still be in place" and would they be put to other uses by government agencies, he asked.
Even before the federal government can come up with a comprehensive monitoring system and ramp up testing, several tech companies and researchers have jumped in to fill the gaps.
Google and Facebook as well as data brokers that collect location information from mobile phone apps have mapped out the drop in economic activity worldwide by examining the movement of mobile phone users who allow their location to be tracked.
The Google dashboard, for example, shows that restaurants, cafes, shopping centers and museums in Washington, D.C., had seen a drop in traffic of 66% as of Sunday, April 5, compared with a median Sunday during the baseline period Jan. 3-Feb. 6.
Kinsa, maker of a smart thermometer that connects to a web-based app, also has launched a website that tracks fever spikes and other flu-like symptoms across the United States.
Apple and Google also unveiled on April 10 that they were collaborating to create new tools that would allow smartphone users to use apps to indicate whether they have tested positive for the disease. The apps then would broadcast a Bluetooth signal that would allow other users with similar apps to figure out if they crossed paths with an infected individual.
Ramesh Raskar, a professor at the Massachusetts Institute of Technology, has led a consortium that includes hospital and public health specialists to develop an app called Private Kit that allows an infected individual to opt for a 28-day tracking using the app.