Who’s looking at your DNA data? California lawmaker introduces genetic privacy bill

A proposed California law would prohibit DNA testing companies like Ancestry and 23andMe from sharing customer DNA information with outside parties without their consent.

Senate Bill 980, sponsored by Sen. Thomas Umberg, D-Santa Ana, comes amid questions about the safety and security of DNA data. The Pentagon in December issued guidelines asking service members not to use direct-to-consumer DNA testing kits due to security issues, according to Yahoo News.

“The fact that the Pentagon just warned all of the country’s military personnel to avoid home DNA tests should raise bright red flags for all consumers,” Umberg said in a statement. “Direct-to-Consumer genetic testing companies have, to date, gone largely unregulated by either state or national governments. This has led to the disclosure of consumers’ private biological information to third parties.”

The California Consumer Privacy Act already protects consumer DNA information by requiring companies to disclose to the consumer what information is being collected and the purpose for which it will be used, as well as the right to opt out of the sale of that information to a third party.

SB 980 would expanded that protection by specifically prohibiting direct-to-consumer genetic testing services companies from disclosing a customer’s genetic information to third parties without that customer’s prior written consent. The bill would create both criminal and civil penalties for violating its provisions.

The bill wouldn’t affect law enforcement’s ability to access the records, Umberg’s office said.

The bill is supported by the California Public Interest Research Group.

“Consumers deserve to have complete control over the sharing of our genetic data, the most personal, private information about our bodies. We strongly support this proposal to require consumers’ opt-in consent before genetic data is shared with third parties,” California Public Interest Research Group Executive Director Emily Rusch said in a statement.