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 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”.

We will continue to update on the status of the Act and other related developments.

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Photo of Joseph J. Lazzarotti Joseph J. Lazzarotti

Joseph J. Lazzarotti is a principal in the Berkeley Heights, New Jersey, office of Jackson Lewis P.C. He founded and currently co-leads the firm’s Privacy, Data and Cybersecurity practice group, edits the firm’s Privacy Blog, and is a Certified Information Privacy Professional (CIPP)…

Joseph J. Lazzarotti is a principal in the Berkeley Heights, New Jersey, office of Jackson Lewis P.C. He founded and currently co-leads the firm’s Privacy, Data and Cybersecurity practice group, edits the firm’s Privacy Blog, and is a Certified Information Privacy Professional (CIPP) with the International Association of Privacy Professionals. Trained as an employee benefits lawyer, focused on compliance, Joe also is a member of the firm’s Employee Benefits practice group.

In short, his practice focuses on the matrix of laws governing the privacy, security, and management of data, as well as the impact and regulation of social media. He also counsels companies on compliance, fiduciary, taxation, and administrative matters with respect to employee benefit plans.

Privacy and cybersecurity experience – Joe counsels multinational, national and regional companies in all industries on the broad array of laws, regulations, best practices, and preventive safeguards. The following are examples of areas of focus in his practice:

  • Advising health care providers, business associates, and group health plan sponsors concerning HIPAA/HITECH compliance, including risk assessments, policies and procedures, incident response plan development, vendor assessment and management programs, and training.
  • Coached hundreds of companies through the investigation, remediation, notification, and overall response to data breaches of all kinds – PHI, PII, payment card, etc.
  • Helping organizations address questions about the application, implementation, and overall compliance with European Union’s General Data Protection Regulation (GDPR) and, in particular, its implications in the U.S., together with preparing for the California Consumer Privacy Act.
  • Working with organizations to develop and implement video, audio, and data-driven monitoring and surveillance programs. For instance, in the transportation and related industries, Joe has worked with numerous clients on fleet management programs involving the use of telematics, dash-cams, event data recorders (EDR), and related technologies. He also has advised many clients in the use of biometrics including with regard to consent, data security, and retention issues under BIPA and other laws.
  • Assisting clients with growing state data security mandates to safeguard personal information, including steering clients through detailed risk assessments and converting those assessments into practical “best practice” risk management solutions, including written information security programs (WISPs). Related work includes compliance advice concerning FTC Act, Regulation S-P, GLBA, and New York Reg. 500.
  • Advising clients about best practices for electronic communications, including in social media, as well as when communicating under a “bring your own device” (BYOD) or “company owned personally enabled device” (COPE) environment.
  • Conducting various levels of privacy and data security training for executives and employees
  • Supports organizations through mergers, acquisitions, and reorganizations with regard to the handling of employee and customer data, and the safeguarding of that data during the transaction.
  • Representing organizations in matters involving inquiries into privacy and data security compliance before federal and state agencies including the HHS Office of Civil Rights, Federal Trade Commission, and various state Attorneys General.

Benefits counseling experience – Joe’s work in the benefits counseling area covers many areas of employee benefits law. Below are some examples of that work:

  • As part of the Firm’s Health Care Reform Team, he advises employers and plan sponsors regarding the establishment, administration and operation of fully insured and self-funded health and welfare plans to comply with ERISA, IRC, ACA/PPACA, HIPAA, COBRA, ADA, GINA, and other related laws.
  • Guiding clients through the selection of plan service providers, along with negotiating service agreements with vendors to address plan compliance and operations, while leveraging data security experience to ensure plan data is safeguarded.
  • Counsels plan sponsors on day-to-day compliance and administrative issues affecting plans.
  • Assists in the design and drafting of benefit plan documents, including severance and fringe benefit plans.
  • Advises plan sponsors concerning employee benefit plan operation, administration and correcting errors in operation.

Joe speaks and writes regularly on current employee benefits and data privacy and cybersecurity topics and his work has been published in leading business and legal journals and media outlets, such as The Washington Post, Inside Counsel, Bloomberg, The National Law Journal, Financial Times, Business Insurance, HR Magazine and NPR, as well as the ABA Journal, The American Lawyer, Law360, Bender’s Labor and Employment Bulletin, the Australian Privacy Law Bulletin and the Privacy, and Data Security Law Journal.

Joe served as a judicial law clerk for the Honorable Laura Denvir Stith on the Missouri Court of Appeals.