Schumer warns DNA test kit companies may sell your private data
The desire to learn more their ancestry is driving increasing numbers of people to buy at-home DNA test kits. U.S. Sen. Charles Schumer on Sunday warned, however, that the kits are putting consumer privacy at great risk.
DNA testing firms don’t always disclose to consumers exactly what they are doing with DNA once it is sent in to their company, and this very private information could end up in the wrong hands, Schumer said.
He is calling on the Federal Trade Commission (FTC) to investigate and ensure that privacy policies all DNA test kits are “clear, transparent and fair to consumers” as these services become more and more popular.
“Putting your most personal genetic information in the hands of third parties for their exclusive use raises a lot of concerns, from the potential for discrimination by employers all the way to health insurance,” Schumer said in a statement. “That’s why I am asking the Federal Trade Commission to take a serious look at this relatively new kind of service and ensure that these companies have clear, fair privacy policies and standards for all kinds of at-home DNA test kits.”
Many consumers purchase DNA test kits, from companies like MyHeritage, Ancestry and others to learn more about their genetics and ancestry.
AncestryDNA’s fine print tells consumers that by submitting their DNA to the firm “…you grant Ancestry and the Ancestry Group Companies a royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute and communicate your genetic information for the purposes of providing products and services.”
Schumer said this kind of language clearly suggests a desire for firms to monetize the DNA data they receive.
According to media reports, the DNA testing market was worth approximately $70 million in 2015 and is expected to rise to $340 million by 2022.This year, AncestryDNA announced it had reached 4 million users in its genetic database, where consumers find relatives, some of whom they did not know existed.
“The last gift any of us want to give away this holiday seasons is our most personal and sensitive information, so that is why we are asking the FTC to step in, take a hard look at this industry and ensure there are across-the-board protections to safeguard consumers and ensure good research continues,” Schumer said.