In a letter to Jared Kushner, Donald Trump’s senior adviser and son-in-law, federal lawmakers on Friday aired concerns about reported efforts to establish a “national surveillance system” to monitor coronavirus patients. The purpose of the program remains, for the most part, a mystery, but allegedly one goal is to help gauge where life-saving medical equipment is most needed. According to reports, however, the system might also grant federal authorities unprecedented access to citizens’ sensitive health information, sparking concerns about potential threats to Americans’ civil liberties.
Politico reported Tuesday that Kushner’s so-called “shadow” task force, a team of government and private-industry representatives that previously set up shop inside the Federal Emergency Management Agency (FEMA)—until one of its members tested positive for covid-19—had reached out to “a range of health technology companies” for the purpose of creating a national database of coronavirus patients.
The government is limited by law as to the kinds of protected health information it’s allowed to collect and store under the Health Insurance Portability and Accountability Act (HIPAA). But there are around a dozen circumstances under which those protections can be waived. A “national security” exemption, for example, allows the government to compel the disclosure of a patient’s medical records without their authorization. Section 215 of the Patriot Act, which was due to expire in March but was extended by Congress specifically because of the coronavirus crisis, is another avenue.
The point is, if the feds really want access to the medical records of Americans being treated for covid-19, they might be able to get it. It’s possible a federal judge might interfere—say, if an organization like the American Civil Liberties Union decided to combat the collection in court—but it’s just as likely the courts wouldn’t rule on whether the collection is constitutional until long after the deed is done.
U.S. Senators Mark Warner and Richard Blumenthal and Congresswoman Anna Eshoo, all of whom are Democrats, pressed Kushner in a letter on Friday to disclose specific details around his team’s efforts to establish a public health surveillance system. For example, the lawmakers would like it known which technology companies and data providers have been approached to participate; whether the system will be dismantled when the crisis is over; and whether the Trump administration is willing to submit to an independent audit of its data-collection efforts.
Lending credence to the “shadow task force” label, the actual goals of this proposed system likewise remain a mystery. “What is the program described in the press meant to accomplish? Will it be used for the allocation of resources, symptom tracking, or contact tracing? What agency will be operating the program and which agencies will have access to the data?” the letter asks.
“This growing health pandemic further exacerbates increasing concerns about the role large tech firms are starting to play in our health care sector. Health care entities are increasingly entering into secret data sharing partnerships with dominant technology platforms,” the lawmakers wrote. “These partnerships have bolstered the platforms’ ability to exploit consumer data and leverage their hold on data into nascent markets such as health analytics.”
They continue: “Contrary to the fundamental, animating principle of HIPAA, this encroachment is occurring without the knowledge or consent of doctors or patients through opaque business agreements and exceptions. We fear that further empowering technology firms and providing unfettered access to sensitive health information during the COVID-19 pandemic could fatally undermine health privacy in the United States.”
The Trump administration has a well-earned reputation for ignoring congressional inquiries when they originate from Democratic members. It seems unlikely that the letter, despite the validity of the concerns it raises, will garner a response. The White House did not immediately respond to Gizmodo’s request for comment.
Unbeknownst to most Americans, the federal government already has a public health surveillance program in place, the entire purpose of which is to track symptoms in emergency rooms. The system, established by the Centers for Disease Control and Prevention (CDC), was created as a kind of early warning system for potential flu outbreaks and, more recently, has been used to track vaping-associated lung disease across the country.
Known as the National Syndromic Surveillance Program (NSSP), the program is currently monitoring potential coronavirus cases throughout the country. According to the CDC, the NSSP works with 4,000 health care facilities in 47 states and the District of Columbia, all of which contribute electronic health data through the CDC’s BioSense Platform on a daily basis.
According to the CDC, that information is “de-identified” prior to being transmitted. (Gizmodo reached out to the CDC for more details about what “de-identified” means precisely, but did not receive a response in time for publication.) It’s unclear what benefit, if any, public health officials would reap from having access to the personal information of cornavirus patients.
Notwithstanding, the fact that there’s an existing program that already collects data on illnesses from thousands of health care facilities across the country raises an important question: Why is the Trump administration now suddenly rushing to create another one?