Jan 28 2021
WASHINGTON - As tech companies and public health agencies deploy new tools to fight the spread of COVID-19 – including contact tracing apps, digital monitoring, home tests, and vaccine appointment booking – U.S. Sens. Mark R. Warner (D-VA), Richard Blumenthal (D-CT) 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.
“Technologies like contact tracing, home testing, and online appointment booking are absolutely essential to stop the spread of this disease, but Americans are rightly skeptical that their sensitive health data will be kept safe and secure,” 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. 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. The Public Health Emergency Privacy Act’s commitment to civil liberties is an investment in our public health.”
“Our health privacy laws have not kept pace with what Americans have come to expect for their sensitive health data,” Warner said. “Strong privacy protections for COVID health data will only be more vital as we move forward with vaccination efforts and companies begin experimenting with things like ‘immunity passports’ to gate access to facilities and services. 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 and discriminatory uses of health data could become the new status quo in health care and public health.”
“I’m exceedingly proud of the American innovators, many of whom are in my congressional district, who have built technologies to combat the coronavirus. As these technologies are used, they must be coupled with policies to protect the civil liberties that define who we are as a nation,” said Eshoo. “The Public Health Emergency Privacy Act is a critical bill that will prohibit privacy invasions by preventing misuse of pandemic-related data for unrelated purposes like marketing, prohibiting the data from being used in discriminatory ways, and requiring data security and integrity measures. The legislation will give the American people confidence to use technologies and systems that can aid our efforts to combat the pandemic.”
“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 re-introduce this bill with my friend and fellow Energy & Commerce Subcommittee Chairwoman Eshoo and Congresswoman DelBene, along with Senators Blumenthal and Warner,” said Schakowsky. “It’s our shared belief that the Trump Administration missed an opportunity when it failed to advocate for swift passage of this legislation. Based on how poorly the Trump Administration’s contact tracing scheme went, we all know 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 the Biden Administration’s plan for widespread testing and manual contact tracing.”
“Technology has become one of our greatest tools in responding to the COVID-19 pandemic but we need to build trust with the broader public if we are going to reach its full potential. Americans need to be certain their sensitive personal information will be protected when using tracing apps and other COVID-19 response technology and this pandemic-specific privacy legislation will help build that trust,” said DelBene. “Data privacy should not end with the pandemic. We need comprehensive privacy reform to protect Americans at all times, including state preemption to create a strong, uniform national standard. I hope that this crisis has shed light on the lack of adequate digital privacy policies in our country and look forward to working with these lawmakers and others to create the necessary standards moving forward.”
The bill is co-sponsored in the Senate by U.S. Senators Michael Bennet (D-CO), Amy Klobuchar (D-MN), Edward J. Markey (D-MA), Tammy Baldwin (D-WI), Mazie K. Hirono (D-HI), Cory Booker (D-NJ), Robert Menendez (D-NJ), Angus King (I-ME), Elizabeth Warren (D-MA) and Dick Durbin (D-IL).
The bill is co-sponsored in the House of Representatives by Don Beyer (D-VA), Jerry McNerney (D-CA), Nanette Diaz Barragán (D-CA), Mark Pocan (D-WI), Bobby Rush (D-IL), Peter Welch (D-VT), Mary Gay Scanlon (D-PA), Doris Matsui (D-CA), Ted Lieu (D-CA), Mark DeSaulnier (D-CA), Jahana Hayes (D-CT), Ro Khanna (D-CA), Jesús ''Chuy'' García (D-IL), Stephen Lynch (D-MA), Raúl Grijalva (D-AZ), Barbara Lee (D-CA), Debbie Dingell (D-MI), and Peter DeFazio (D-OR).
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 Access Now, Electronic Privacy and Information Center (EPIC), the Center for Digital Democracy, Color of Change, Common Sense Media, New America’s Open Technology Institute, and Public Knowledge.
“A public health crisis is not the time to give up on our privacy rights, and this bill would go a long way toward protecting those rights. COVID-19 response apps are already out there, and this bill will help ensure that the apps are distributed and used in a responsible manner that will limit the new and expansive surveillance systems companies are building. Allowing these apps to proceed unchecked would create serious privacy violations that will never be undone,”said Eric Null, U.S. Policy Manager at Access Now.
“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).
“Public health measures to contain the deadly spread of COVID-19 must be effective and protect those most at risk. Where data are collected or used, they should not be misused to undermine privacy, fairness and equity, or place our civil rights in peril. The Public Health Emergency Privacy Act ensures that efforts to limit the spread of the virus truly protect all our interests,” said Katharina Kopp, Director of Policy for the Center for Digital Democracy.
“Color Of Change strongly supports the Public Health Emergency Privacy Act, as it would prevent corporate profiteering and government misuse of health data to help ensure Black people — who are disproportionately exposed to the dangers of surveillance — can operate online without fear. Profit-incentivized corporations should not be allowed to exploit loopholes to gather and sell sensitive health and location data without any regard to the safety of our communities. As the COVID-19 pandemic rages on, we need stringent and enforceable safeguards in place to protect private health information of Black people and other marginalized communities, who are most at risk of both COVID-19 and surveillance. We thank Senators Blumenthal and Warner for their leadership on this legislation, and we will continue to advocate for the highest standard of protection against the abuse of personal data,” said Color Of Change President Rashad Robinson.
“Common Sense calls on Congress to pass meaningful privacy safeguards for families. More than ever, the pandemic has highlighted how important it is that families can trust how their information is being collected, used, and shared. PHEPA is an important proposal to ensure technologies and data being used to combat COVID are used in privacy-protective ways, and it also can serve as a model for how Congress can comprehensively protect privacy in the near future,” said Ariel Fox Johnson, Senior Counsel for Global Policy with Common Sense Media.
“OTI welcomes the re-introduction of this legislation that would establish strong safeguards to prevent personal data from being used for non-public health purposes and prevent the data from being used in a discriminatory manner. The ongoing privacy threats and urgency of the pandemic make these protections more important than ever,” said Christine Bannan, Policy Counsel at New America’s Open Technology Institute.
“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.