[WASHINGTON, DC] – As tech companies and public health agencies deploy contact tracing apps and digital monitoring tools to fight the spread of COVID-19, U.S. Senators Richard Blumenthal (D-CT) and Mark Warner (D-VA) and U.S. Representatives Anna G. Eshoo (D-CA), Jan Schakowsky (D-IL), and Suzan DelBene (D-WA) introduced the Public Health Emergency Privacy Act to set strong and enforceable privacy and data security rights for health information.
After decades of data misuse, breaches, and privacy intrusions, Americans are reluctant to trust tech firms to protect their sensitive health information – according to a recent poll, more than half of Americans would not use a contact tracing app and similar tools from Google and Apple over privacy concerns. The bicameral Public Health Emergency Privacy Act would protect Americans who use this kind of technology during the pandemic and safeguard civil liberties. Strengthened public trust will empower health authorities and medical experts to leverage new health data and apps to fight COVID-19.
“This measure sets strict and straightforward privacy protections and promises: Your information will be used to stop the spread of this disease, and no more,” Blumenthal said. “Legal safeguards protecting consumer privacy failed to keep pace with technology, and that lapse is costing us in the fight against COVID-19. Americans are rightly skeptical that their sensitive health data will be kept safe and secure, and as a result, they’re reluctant to participate in contact tracing programs essential to halt the spread of this disease. The Public Health Emergency Privacy Act’s commitment to civil liberties is an investment in our public health.”
“Communications technology has obviously played an enormously important role for Americans in coping with and navigating the new reality of COVID-19 and new technology will certainly play an important role in helping to track and combat the spread of this virus. Unfortunately, our health privacy laws have not kept pace with the privacy expectations Americans have come to expect for their sensitive health data,” Warner said. “Absent a clear commitment from policymakers to improving our health privacy laws, as this important legislation seeks to accomplish, I fear that creeping privacy violations could become the new status quo in health care and public health. The credibility – and indeed efficacy – of these technologies depends on public trust.”
“I’m thankful that our country is blessed with the world’s best innovators and technologists, many of whom I represent in the House, and that they have joined the effort to combat the coronavirus by using technology to control the spread of the virus,” said Eshoo. “As we consider new technologies that collect vast amounts of sensitive personal data, we must not lose site of the civil liberties that define who we are as a nation. I’m proud to join my colleagues to introduce the Public Health Emergency Privacy Act, strong and necessary legislation that protects the privacy of every American while ensuring that innovation can aid important public health efforts.”
“As we continue to respond to the devastating suffering caused by COVID-19, our country’s first and foremost public health response must be testing, testing, testing, AND manual contact tracing. Digital contact tracing can and should complement these efforts, but it is just that – complimentary. However, if we do pursue digital contact tracing, consumers need clearly-defined privacy rights and strong enforcement to safeguard these rights. I am proud to introduce this bill with my friend and fellow Energy & Commerce Subcommittee Chairwoman Eshoo, along with Senators Blumenthal and Warner,” said Schakowsky. “It’s our shared belief that swift passage of this legislation would go a long way towards establishing the trust American consumers need – and which Big Tech has squandered, time and again – for digital contact tracing to be a worthwhile auxiliary to widespread testing and manual contact tracing.”
“We must use every tool available to us to respond to the COVID-19 pandemic. Contract tracing, along with testing, are the cornerstones of a science-based approach to addressing this historic crisis. We can protect our public health response and personal data privacy,” said DelBene. “I have been calling on the Trump administration and the private sector to adopt data privacy principles since the start of this outbreak. It is time for Congress to lead the way in assuring we have a strong national contact tracing system and that Americans’ personal data is protected. This bill will achieve this mutual goal.”
Eshoo, Schakowsky, and DelBene introduced House legislation with original co-sponsors House Energy and Commerce Committee Vice Chair Yvette Clarke (D-NY), Health Subcommittee Vice Chair G. K. Butterfield (D-NC), and Consumer Protection & Commerce Subcommittee Vice Chair Tony Cárdenas (D-CA).
The Public Health Emergency Privacy Act would:
- Ensure that data collected for public health is strictly limited for use in public health;
- Explicitly prohibit the use of health data for discriminatory, unrelated, or intrusive purposes, including commercial advertising, e-commerce, or efforts to gate access to employment, finance, insurance, housing, or education opportunities;
- Prevent the potential misuse of health data by government agencies with no role in public health;
- Require meaningful data security and data integrity protections – including data minimization and accuracy – and mandate deletion by tech firms after the public health emergency;
- Protect voting rights by prohibiting conditioning the right to vote based on a medical condition or use of contact tracing apps;
- Require regular reports on the impact of digital collection tools on civil rights;
- Give the public control over their participation in these efforts by mandating meaningful transparency and requiring opt-in consent; and
- Provide for robust private and public enforcement, with rulemaking from an expert agency while recognizing the continuing role of states in legislation and enforcement.
The Public Health Emergency Privacy Act is endorsed by Lawyers’ Committee for Civil Rights Under Law, Public Knowledge, New America’s Open Technology Institute, Consumer Reports, Free Press, Electronic Privacy and Information Center (EPIC), Public Citizen, health privacy scholar Frank Pasquale, and privacy scholar Ryan Calo.
“African Americans and other marginalized communities are suffering disproportionately from coronavirus and its economic effects. They do not need further harm from snake oil surveillance tech. This bill protects the most vulnerable—it ensures that any technology used to track the virus is not used to unfairly discriminate in employment, voting, housing, education, and everyday commerce,” said David Brody, Counsel and Senior Fellow for Privacy & Technology at the Lawyers’ Committee for Civil Rights Under Law
“As contact tracing apps and other types of COVID-19 surveillance become commonplace in the United States, this legislation will protect the privacy of Americans regardless of the type of technology used or who created it. It is critical that Congress continue to work to prevent this type of corporate or government surveillance from becoming ubiquitous and compulsory,” said Sara Collins, Policy Counsel at Public Knowledge.
“OTI welcomes this effort to protect privacy as lawmakers consider pandemic response plans that gather vast quantities of data. The bill would establish strong safeguards that would prevent personal data from being used for non-public health purposes and prevent the data from being used in a discriminatory manner,” said Christine Bannan, Policy Counsel at New America’s Open Technology Institute.
“When it comes to tracking and collecting people’s data, we want to make sure there are basic protections for people’s privacy, and this bill is a positive step to establish the trust and balance that’s needed. The bill smartly requires that data collected to fight coronavirus can only be used for public health purposes – and nothing else. Importantly, the bill ensures an individual's right to seek redress for violations, and it bars against the use of pre-dispute arbitration agreements. These measures will help individuals trust contact-tracing or proximity-tracing programs, and they can serve as a model for more comprehensive protections down the road,” said Justin Brookman, Director of Consumer Privacy and Technology Policy for Consumer Reports.
“Digital contact tracing and exposure notification systems may be important tools in combating the spread of coronavirus. But they must be deployed responsibly and with adequate safeguards that protect the privacy and civil rights of the people that use them. The Public Health Emergency Privacy Act is a serious effort at ensuring our rights are protected while giving public health officials the tools they need to track and notify those exposed to COVID-19. These rules must apply to everyone using these systems, whether that’s state or local governments, employers, or other tech companies. This bill protects the civil rights of the most vulnerable essential workers, the disproportionately Black and Latinx people most exposed to the virus, and will help ensure they’re not also subject to invasive and unnecessary surveillance that will linger long after this crisis passes,” said Gaurav Laroia, Senior Policy Counsel with Free Press.
“The Public Health Emergency Privacy Act shows that privacy and public health are complementary goals. The bill requires companies to limit the collection of health data to only what is necessary for public health purposes, and crucially, holds companies accountable if they fail to do so,” said Caitriona Fitzgerald, Interim Associate Director and Policy Director with Electronic Privacy Information Center (EPIC).
“What we need more than anything during this global emergency is to feel less vulnerable, to be sure not just that our health is protected, but that our rights are protected as well. This bill will ensure that whatever technological innovation emerges during the pandemic, we will feel safer knowing that our rights to privacy, to our day in court and to access to the ballot box won’t be threatened,” said Robert Weissman, President of Public Citizen. “This bill establishes critical protections for patients whose health data is released in the context of the public health emergency. To build a trusted data infrastructure, the US needs to ensure that any entity which accesses such data is held accountable and does not abuse the public trust. The Public Health Emergency Privacy Act is a big step in the right direction,” said Frank Pasquale, Piper & Marbury Professor of Law at University of Maryland Carey School of Law.
“This draft legislation addresses two of my biggest privacy concerns about the use of technology and information to respond to COVID-19. As the Act makes clear, the emergency health data of Americans should only be used to fight the pandemic and should never be used to discriminate or deny opportunity,” said Ryan Calo, Lane Powell & D. Wayne Gittinger Endowed Professor at University of Washington School of Law.