Despite several attempts, Congress has struggled to push forward a federal consumer privacy law over the past few years. But the COVID-19 pandemic, which has raised concerns regarding location monitoring, GPS tracking and use of health data, has heightened the urgency for federal consumer privacy legislation. In May, a group of Democrats from the U.S. Senate and House of Representatives introduced the Public Health Emergency Privacy Act (“the Act”), aimed to protect health information during the pandemic and regulate the use of that data with contact tracing technologies.

In late July, the Senate Committee of Appropriations introduced an Emergency Coronavirus Stimulus Package (“the Stimulus Package”) which would allocate $53 million of the $306 million package, to the Department of Homeland Security Cybersecurity and Infrastructure Security Agency for the protection of Coronavirus research data and related data. In addition, a group of 13 senators including Kamala Harris, D-California, Elizabeth Warren, D-Massachusetts, and Mark Warner, D-Virginia, sent a letter to Senate and Congressional leadership, asking for the Act to be included in the passage of the Stimulus Package.

“Health data is among the most sensitive data imaginable and even before this public health emergency, there has been increasing bipartisan concern with gaps in our nation’s health privacy laws,” the Senators stated in their letter.

“While a comprehensive update of health privacy protections is unrealistic at this time, targeted reforms to protect health data – particularly with clear evidence that a lack of privacy protections has inhibited public participation in screening activities – is both appropriate and necessary,” they added.

Under the Act, “Covered Organizations” is defined as “any person that collects, uses, or discloses  emergency health data electronically or  through communication by wire or radio; OR that develops or operates a website, web application, mobile application, mobile operating system feature, or smart device application for the purpose of tracking, screening, monitoring, contact tracing, or mitigation, or otherwise responding to the COVID–19 public health emergency.” NOTE:  Covered Organizations do not include: a health care provider; a person engaged in a de minimis collection or processing of emergency health data; a service provider; a person acting in their individual or household capacity; or a public health authority.

The Act would protect “emergency health data” which means “data linked or reasonably linkable to an individual or device, including data inferred or derived about the individual or device from other collected data provided such data is still linked or reasonably linkable to the individual or device, that concerns the public COVID–19 health emergency.” Examples of such data include:

• information that reveals the past, present, or future physical or behavioral health or condition of, or provision of healthcare to, an individual, including data derived from testing an individual. This likely would include COVID-19 viral or serological test results, along with genetic data, biological samples, and biometrics;
• other data collected in conjunction with other emergency health data or for the purpose of tracking, screening, monitoring, contact tracing, or mitigation, or otherwise responding to the COVID–19 public health emergency, such as (i) geolocation and similar information for determining the past or present precise physical location of an individual at a specific point in time, (ii) proximity data that identifies or estimates the past or present physical proximity of one individual or device to another, including information derived from Bluetooth, audio signatures, nearby wireless networks, and near-field communications; and (iii) any other data collected from a personal device.

Below are key requirements of the Act for Covered Organizations:

• Only collect, use or disclose data that is necessary, proportionate and limited for a good-faith health purpose;

• Take reasonable measures, where possible, to ensure the accuracy of data and provide a mechanism for individuals to correct inaccuracies;

• Adopt reasonable safeguards to prevent unlawful discrimination on the basis of emergency health data;

• Only disclose data to a government entity if it is to a public health authority and is solely for good faith public health purposes;

• Establish and implement reasonable data security policies, practices and procedures;

• Obtain affirmative express consent before collecting, using or disclosing emergency health data, and provide individuals with an effective mechanism to revoke that consent. NOTE: There are limited exceptions where consent is not required including to protect from fraud/malicious activity, to prevent a security incident, or if otherwise required by law;

• Provide notice in the form of a privacy policy prior to collection that describes how and for what purposes the data will be used (including categories of recipients), the organization’s data security policies and practices, and how individuals may exercise their rights.

If enacted, the Federal Trade Commission (FTC) would be required to promulgate rules regarding data collection, use and disclosure under the Act. In addition, both the FTC and state attorneys general would have enforcement authority over the Act.

The Act, if passed, would be a temporary measure that would be terminate once COVID-19 was no longer deemed a public emergency. Covered organizations would be required to not use or maintain emergency health data 60 days after the termination of the public health emergency, and destroy or render not linkable such data.

With no comprehensive Federal privacy framework in place, the Senators are urging Congressional leadership to allow for a measure that provides “Americans with assurance that their sensitive health data will not be misused will give Americans more confidence to participate in COVID screening efforts, strengthening our common mission in containing and eradicating COVID-19”.