Lawmaker's Crack Down on the Privacy Policies of Genetic Testing Companies

23andMe Testing Kit. (Photo: Frances Shaw)

With the rise of direct-to-consumer genetic testing, our data privacy has never been so imperative.

US representatives Dave Loebsack of Iowa and Frank Pallone Jr. of New Jersey pressed four genetic testing companies for details on their security systems and customer privacy policies, reports Stat.

“Much more often than not, Congress acts after the horse is out of the barn,” Loebsack said. “I want to try to partner with genetic testing services to address any potential challenges before there are actually breaches of trust.”

The democratic lawmakers are looking to resolve privacy and security issues with four major companies in the space: 23andMe, AncestryDNA, Family Tree DNA, and National Geographic Geno.

How Privacy Policies Affect Genetic Testing

They are asking for more detail directly from the companies, including information about how their customers’ data is stored, used, and deleted upon request. 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.

“Customers have to be assured that their data is being protected,” Loebsack said.

That’s also why we’re organising a ‘Precision Data SIG’ meeting in Boston in September. The more that we can do to ensure standards are set and matched, the more benefit we will see from the large swathes of data that are being created but are not yet being fully utilised.

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