NCL calls for investigation of direct-to-consumer genetic testing industry in the wake of FamilyTreeDNA revelations

February 27, 2019

Media contact: National Consumers League – Carol McKay, carolm@nclnet.org, (412) 945-3242 or Taun Sterling, tauns@nclnet.org, (202) 207-2832

Washington, DC – Reports that DNA testing services like FamilyTreeDNA are sharing genetic data with law enforcement agencies should prompt regulators and Congress to consider new rules to protect consumers from abuses by the direct-to-consumer (DTC) DNA testing industry, said the National Consumers League (NCL) today. The reports about FamilyTreeDNA come on the heels of other revelations about lax data security and the potential for misinformation stemming from consumers’ use of DTC genetic testing kits.

“Our genetic information is literally the code for who we are,” said NCL Executive Director Sally Greenberg. “The value of genetic data to law enforcement must be weighed against the significant potential for harm from misuse of such data. Our DNA data is tremendously sensitive, and extreme care must be taken to ensure that it is not used in unexpected ways or, even worse, misused to harm consumers. Unfortunately, the DTC genetic testing industry has exploded without effective oversight, leaving consumers at the mercy of companies whose primary goal may be monetizing this valuable data, not respecting their users’ privacy.”

Specifically, NCL urges policymakers to take common-sense steps to better protect consumers’ genetic data, including:

• The Federal Trade Commission should immediately broaden its existing investigations of DTC DNA testing services to determine whether FamilyTreeDNA and similar services have engaged in unfair or deceptive trade practices by sharing genetic data with law enforcement without adequate notice and consent by users;
• DTC DNA testing websites should collectively pledge to obtain affirmative opt-in consent from current and new users prior to allowing law enforcement agencies access to users’ genetic data without appropriate legal process; and
• Congress should convene hearings to examine how widespread abuses of consumer privacy by the DTC DNA testing industry are and what, if any, new consumer protection regulations are needed to address the potential for consumer harm in this rapidly growing industry.

For more information about the National Consumers League’s work on privacy issues and data security, visit https://fraud.org/data-breach-epidemic/.

About the National Consumers League

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.