Senator Thomas J. Umberg (D-Santa Ana) announced today his introduction of legislation that would assure consumers that Direct-to-Consumer (DTC) genetic testing companies will use their genetic data solely for the purposes they consented to.
“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,” said Senator Umberg. “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.”
Although the California Consumer Privacy Act (CCPA) regulates DTC genetic companies by allowing consumers to request information on how their data is being used and to opt out if they so wish, it does not solve the fact that current authorization forms are confusing, and consumers often lack clarity about what they are consenting to. Several media outlets have published stories in recent months of genetic data being improperly used to conduct drug research, discriminate against possible consumers in regard to insurance products, or being stored on hackable private servers.
In December 2019, the Pentagon issued a memo asking service members to not use DTC genetic services due to, “the increased concern in the scientific community that outside parties are exploiting the use of genetic materials for questionable purposes, including mass surveillance and the ability to track individuals without their authorization or awareness.”
Umberg’s measure, Senate Bill 980, creates strict guidelines for authorization forms in a manner that allows consumers to have control over how their DNA will be used. In addition, the measure creates civil penalties for companies that fail to comply with the provisions within it. By passing this act, California would be joining four other states that have made it clear that consumers should control their genetic data without fear of third parties exploiting it. “Forcing these companies to clarify their consent forms and requiring them to obtain written authorization for any genetic data disclosure, including de-identified data, will reassure California consumers that their most personal information is safe,” noted Senator Umberg.
In support of SB 980, Emily Rusch, Executive Director of the California Public Interest Research Group (CALPIRG) noted that, “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.”
Senate Bill 980 (language attached) will be assigned to, and heard, by Senate policy committees in mid-late March.