Washington, D.C. – Today fourteen leading consumer, privacy, civil liberties and digital rights organizations wrote to the Senate Committee on Health, Education, Labor & Pensions and the House Committee on Energy and Commerce to urge support for the Public Health Emergency Privacy Act, legislation that would ensure that Americans’ sensitive information is kept private and secure when they use a contact tracing app, exposure notification app, or other technology as part of the public health response to the COVID-19 crisis. The letter, signed by Access Now, Campaign for a Commercial-Free Childhood, Center for Digital Democracy, Consumer Action, Constitutional Alliance, Consumer Federation of America, EPIC, Free Press Action, Media Alliance, Open Technology Institute, Privacy Rights Clearinghouse, Public Citizen, Public Knowledge, and The Parent Coalition for Student Privacy, points out that this protection is essential to instill confidence and trust in the programs that are designed to combat the virus, especially since some of the entities involved are not covered by existing federal law.
“Privacy, security, and public health are not competing goals; they are complementary,” the groups said. “Congress must act quickly to put the necessary guardrails in place to protect Americans from unfettered use of the health data that is collected for the COVID-19 emergency.”
The legislation, introduced by Senator Richard Blumenthal (D-CT) and Representative Anna G. Eshoo (D-CA-18) would:
- Limit the collection, use and disclosure of emergency health data to public health purposes;
- Prohibit emergency health data from being used for unrelated or intrusive purposes such as commercial advertising and ecommerce, and bar its use to deny or discriminate against individuals seeking employment, finance, insurance, housing, or education opportunities;
- Prevent the potential misuse of emergency 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 ends;
- Protect voting rights by prohibiting conditioning the right to vote on a medical condition or use of contact tracing apps;
- Require regular reports on the impact of digital collection tools on civil rights;
- Give people control over disclosure of their emergency health data by requiring meaningful transparency and opt-in consent; and
- Hold companies accountable by providing for robust private and public enforcement, with rulemaking from an expert agency while recognizing the continuing role of states in legislation and enforcement.
The groups noted, “Many people are already suffering from physical, financial and psychological distress due to the pandemic. It is crucial to enact this legislation to prevent the unfair and detrimental treatment of individuals and communities that can result from the inappropriate use and disclosure of the health data needed to combat COVID-19.”