Washington, D.C. – Today, 15 leading consumer, privacy, civil and digital rights organizations called on the federal government to set guidelines to protect individuals’ privacy, ensure equity in the treatment of individuals and communities, and communicate clearly about public health objectives in responding to the COVID-19 pandemic.
In a letter to Vice President Michael R. Pence, who leads the Coronavirus Task Force, the groups said that the proper use of technology and data have the potential to provide important public health benefits, but must incorporate privacy and security, as well as safeguards against discrimination and violations of civil and other rights. Developing a process to assess how effective technology and other tools will be to achieve the desired public health objectives is also vitally important, the groups said. The letter was signed by the Campaign for a Commercial Free Childhood, Center for Democracy & Technology, Center for Digital Democracy, Constitutional Alliance, Consumer Action, Consumer Federation of America, Electronic Privacy Information Center (EPIC), Media Alliance, MediaJustice, Oakland Privacy, Parent Coalition for Student Privacy, Privacy Rights Clearinghouse, Public Citizen, Public Knowledge, and Rights x Tech.
“A headlong rush into technological solutions without carefully considering how well they work and whether they could undermine fundamental American values such as privacy, equity, and fairness would be a mistake,” said Susan Grant, Director of Consumer Protection and Privacy at the Consumer Federation of America. “Fostering public trust and confidence in the programs that are implemented to combat COVID-19 is crucial to their overall success.”
“Measures to contain the deadly spread of COVID-19 must be effective and protect those most exposed. History has taught us that the deployment of technologies is often driven by forces that tend to risk privacy, undermine fairness and equity, and place our civil rights in peril. The White House Task Force must work with privacy, consumer and civil rights groups, and other experts, to ensure that the efforts to limit the spread of the virus truly protect our interests,” said Katharina Kopp, Director of Policy, Center for Digital Democracy.
In addition to concerns about government plans that are being developed to address the pandemic, such as using technology for contact tracing, the groups noted the need to ensure that private-sector partnerships incorporate comprehensive privacy and security standards.
The letter outlines 11 principles that should form the basis for standards that government agencies and the private sector can follow:
- Set science-based, public health objectives to address the pandemic. Then design the programs and consider what tools, including technology, might be most efficacious and helpful to meet those objectives.
- Assess how technology and other tools meet key criteria. This should be done before deployment when possible and consistent with public health demands, and on an ongoing basis. Questions should include: Can they be shown to be effective for their intended purposes? Can they be used without infringing on privacy? Can they be used without unfairly disadvantaging individuals or communities? Are there other alternatives that would help meet the objectives well without potentially negative consequences? Use of technologies and tools that are ineffective or raise privacy or other societal concerns should be discontinued promptly.
- Protect against bias and address inequities in technology access. In many cases, communities already disproportionately impacted by COVID-19 may lack access to technology, or not be fairly represented in data sets. Any use of digital tools must ensure that nobody is left behind.
- Set clear guidelines for how technology and other tools will be used. These should be aimed at ensuring that they will serve the public health objective while safeguarding privacy and other societal values. Public and private partners should be required to adhere to those guidelines, and the guidelines should be readily available to the public.
- Ensure that programs such as technology-assisted contact tracing are voluntary. Individual participation should be based on informed, affirmative consent, not coercion.
- Only collect individuals’ personal information needed for the public health objective. No other personal information should be collected in testing, contact tracing, and public information portals.
- Do not use or share individuals’ personal information for any other purposes. It is important to avoid “mission creep” and to prevent use for purposes unrelated to the pandemic such as for advertising, law enforcement, or for reputation management in non-public health settings.
- Secure individuals’ personal information from unauthorized access and use. Information collected from testing, contact tracing and information portals may be very revealing, even if it is not “health” information, and security breaches would severely damage public trust.
- Retain individuals’ personal information only for as long as it is needed. When it is no longer required for the public health objective, the information should be safely disposed of.
- Be transparent about data collection and use. Before their personal information is collected, individuals should be informed about what data is needed, the specific purposes for which the data will be used, and what rights they have over what’s been collected about them.
- Provide accountability. There must be systems in place to ensure that these principles are followed and to hold responsible parties accountable. In addition, individuals should have clear means to ask questions, make complaints, and seek recourse in connection with the handling of their personal information.
The groups asked Vice President Pence for a meeting to discuss their concerns and suggested that the Coronavirus Task Force immediately create an interdisciplinary advisory committee comprised of experts from public health, data security, privacy, social science, and civil society to help develop effective standards.