Verily's COVID-19 website becomes a health data privacy battleground
"These tools can be a helpful part of the solution during our ongoing public health emergency, but patient privacy shouldn't be sacrificed as a result," said Sen. Mark Warner.
Verily's COVID-19 screening website has prompted the latest dispute between Alphabet and policymakers over protecting health data.
Even as the tech giant has raced to help triage the crisis, lawmakers contacted by Protocol expressed concern about how the data the website collects might end up being used commercially and whether Verily is complying with privacy laws. More broadly, there's concern, shared by some experts, that the health privacy legislation that exists doesn't adequately account for how health data has evolved with new technology.
On Tuesday, a group of senators led by Bob Menendez, D-N.J., sent a letter to Verily asking for more details about what the company plans to do with data collected as part of its response to COVID-19. It's the second such letter the company has received from lawmakers regarding the site.
"First and foremost, all the data to be collected in this pilot program or any other related screening websites should remain confidential and must not be used for any commercial purposes in the future, and Verily should clearly state if the collected information is in compliance with the Health Insurance Portability and Accountability Act (HIPAA)," the lawmakers wrote.
The letter also argues that people "interested in accessing SARS-CoV-2 screening websites should not be required to create or sign in to a Google account (or any other email account) to access this critical health resource."
Asked about Verily's COVID-19 screening effort, Sen. Mark Warner, D-Va., told Protocol that he plans to fight for health data privacy provisions in the next economic stimulus package, which lawmakers are just beginning to negotiate.
"While technology can certainly help improve screening and potential contact tracing in some cases, I have serious concerns that certain companies are using this as an excuse to hoover up sensitive health data," Warner said. "I sought unsuccessfully to include health data privacy provisions in the 'COVID-3' legislation and hope that subsequent legislation will contain these important protections."
"These tools can be a helpful part of the solution during our ongoing public health emergency, but patient privacy shouldn't be sacrificed as a result," he said.
Verily launched a pilot site that helps people determine if people in parts of the Bay Area should seek COVID-19 testing last month. The pilot site immediately drew scrutiny from lawmakers, who quickly reached out to Alphabet with questions a few weeks ago.
Verily tried to assuage concerns in a response from CEO Andrew Conrad dated March 26, provided to Protocol by Menendez's office. People were required to use Google accounts to sign in because it "was built on Verily's preexisting Baseline platform to secure health information, and needed a reliable and secure means of user authentication for its site," Conrad wrote.
Google "does not have access to the data beyond its role to provide infrastructure, security services, data storage, website hosting, and other support functions," he wrote, saying that the company would be prohibited from using the information for commercial purposes or selling it to third parties.
However, that doesn't go far enough for Patient Privacy Rights founder Deborah Peel. Under the current setup, there's no oversight to prove that the company isn't using the data for commercial purposes or selling it to third parties, she told Protocol in an email.
The questions point to larger, industry-wide issues about just what is protected under current health privacy laws, particularly the oft-cited HIPAA.
"One critical distinction the policymakers are already thinking about is not everything for which … there should be health privacy protection is necessarily protected by HIPAA," said Leon Rodriguez, a health privacy lawyer who previously served as the director of the office of civil rights at the Department of Health and Human Services.
Conrad did not directly respond to a question about the site's HIPAA compliance; instead, in a long paragraph, he highlighted how the Baseline platform the COVID-19 site relies on "was built to securely manage personal health information and designed to follow applicable federal and state regulations governing the collection and use of an individual's data."
"Their answer is very wishy-washy," a Menendez aide told Protocol, describing why the second letter asked about HIPAA again.
"It'd be better if they just came out and said, 'We don't think HIPAA applies to us,' and then we could have a conversation about … maybe it should, or maybe it does and you're not complying."
"HIPAA's supposed to protect your personal health care information," the aide said, adding that if Verily answered the question point-blank, "then we can have a conversation … and that would inform our policy decisions."
The Baseline program's FAQ page explicitly says it is HIPAA compliant, but the FAQ for the COVID-19 site does not mention the law, instead saying that "Project Baseline follows federal and state regulations governing the collection and use of an individual's data" and information is stored "in advanced systems with security and privacy protocols."
Verily did not respond to an inquiry about HIPAA compliance for the COVID-19 site.
University of Virginia law professor Margaret Riley told Protocol in an email that Verily may not be a "covered entity" under HIPAA. Covered entities are typically health care providers, health plans or health information clearinghouses that are subject to specific privacy and security rules under HIPAA and must give users certain rights related to their health information.
Still, Riley said, "[Verily] does seem to have relationships with covered entities," which means there are likely business agreements that address data protection.
"Verily has informed consent/privacy agreements with the individuals who participate," Riley added. "Those seem to meet HIPAA requirements even if those HIPAA requirements are not technically applicable."
Peel argued that patients essentially lack substantive privacy rights to electronic health data even under HIPAA's current status quo due to a rules change made in 2002, which rescinded consent requirements for data transfer.
HIPAA now "guarantees that the data holders can do whatever they want with our health data," she told Protocol.
Google has long wrestled with how HIPAA applies to its work. In the first iteration of Google Health, a medical data project launched in 2008 and shuttered in 2012, the company was explicit that HIPAA did not apply.
"Google is not a 'covered entity' under the Health Insurance Portability and Accountability Act of 1996 and the regulations promulgated thereunder ('HIPAA')," the terms of the program stated. "As a result, HIPAA does not apply to the transmission of health information by Google to any third party."
In 2013, facing the questions raised as large tech companies including Google and Amazon partnered with health providers to store data in the cloud, the Department of Health and Human Services issued new rules that bound cloud vendors to more oversight under HIPAA. The arrangement today mainly leaves the onus on Google's business associates to certify their HIPAA compliance.
Even before this pandemic, Alphabet's more recent health-related ventures raised eyebrows on Capitol Hill, especially last November after reports that the company would gain access to millions of people's health records through a partnership with health care provider Ascension. The Department of Health and Human Services' Office for Civil Rights is also investigating the arrangement.
Also last year, Sens. Amy Klobouchar, D-Minn., and Lisa Murkowski, R-Alaska, introduced the Protecting Personal Health Data Act, which would require the Department of Health and Human Services to work with the Federal Trade Commission to issue new rules about health data.
Verily isn't the only tech company building screening tools to fight the coronavirus crisis, and concerns about health privacy are likely to extend beyond Alphabet amid the outbreak.
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For example, Menendez's office told Protocol it's looking into Apple's recently launched a screening website that allows users to list their symptoms to see if they need to get tested. The landing page for Apple's tool pledges "Apple is not collecting your answers from the screening tool … The information collected will not personally identify you."
In response to a request for comment, Apple pointed Protocol to its original announcement, which specifies that the website does not require any "sign-in or association with a user's Apple ID."