Pressure is growing on direct-to-consumer genealogy and genetic testing companies to be more transparent about their privacy policies, after the arrest of the notorious Golden State Killer using publicly available data from one of the websites.
In a letter sent this week — and shared with STAT — Reps. Dave Loebsack of Iowa and Frank Pallone Jr. of New Jersey peppered four of the platforms with questions about their security systems and customer privacy. The Democratic lawmakers are hoping to work with the companies — 23andMe, AncestryDNA, Family Tree DNA, and National Geographic Geno — to identify and resolve any privacy and security issues. And they’re in a prime position to do so.
Specifically, the lawmakers want to know what personal information is collected from customers, which employees of the companies can see that information, and which third parties can buy or access the data. They also have questions about the security systems in place to make sure that the information is secure.
And the lawmakers asked for details on how customers are informed about their rights, what they’re told about opting out of certain features or deleting their data, and how they’re notified about changes to the companies’ privacy policies.
“Customers have to be assured that their data is being protected,” Loebsack said.
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