National Consumers League Calls for Stronger Genetic Privacy Protections
April 7, 2022
Media contact: National Consumers League – Katie Brown, katie@nclnet.org, (202) 207-2832
Washington, D.C. – The National Consumers League (“NCL”) today called on policymakers in Congress and the Biden Administration as well as industry leaders to adopt the organization’s new “Genetic Privacy Rights,” as guideposts for future actions to protect consumers’ genetic data. The group called for legislation, executive actions, and industry practices that protect the “complete confidentiality” of genetic data. The organization further called for the adoption of an “ethical use” standard prohibiting the use of consumers genetic data for military, surveillance, and similar purposes. Finally, given the emerging misuse of genetic data to violate human rights, the group called for protections against Americans’ genetic data being shared with countries deemed “foreign adversaries” of the United States.
“Unlike a password or credit card number, consumers’ DNA cannot be changed even if it has been compromised,” said John Breyault, NCL’s Vice President for Public Policy, Telecommunications and Fraud. “While personal data of all types can be misused to harm consumers, the unique and inalterable nature of genetic data makes special privacy and security protections necessary. As access to genetic data becomes increasingly widespread in both private and governmental contexts, the threats of misuse have only grown.”
The potential for misuse of genetic data has been highlighted by the activities of foreign adversaries of the United States. For example, entities associated with the Chinese government have made it a priority to collect genetic data of American citizens to help build more effective surveillance technologies. The Russian government has also sought to collect genetic data to build “genetic passports” that experts believe could be used to build lists of individuals’ genetic traits and health risks.
“Clear rules of the road that give consumers’ genetic data the utmost legal protection is urgently needed,” said Breyault. “Consumers should be confident that when they share their genetic data with health care providers or private entities, that data will not be shared for purposes beyond which it was provided or with entities that are not committed to the ethical use of that data.”
The full list of NCL’s proposed genetic privacy rights is available here. A roadmap of potential legislative, executive, and industry actions is available here.
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About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.
