A state senator in California is introducing legislation designed to provide more direct oversight over direct-to-consumer genetic testing companies.
The new regulations, introduced by Santa Ana’s Democratic Senator Thomas Umberg, builds on attempts in the California Consumer Privacy Act to regulate the ways data collected from genetic testing can be used by companies.
“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, 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 CCPA regulates genetic testing companies by allowing consumers to request information on how their data is used and opt-out of any unauthorized applications of their data or sale of that data to third parties.
However, the current authorization forms are confusing and consumers often don’t have a lot of clarity into what they’ve consented to allow genetic testing companies to do with the data, according to a statement from Umberg’s office.
Umberg, a retired U.S. Army Colonel, former federal prosecutor and small business owner who lives in Orange County, noted that the Pentagon issued a memo requesting service members not use DTC genetic services because, “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.”
Under Umberg’s proposal, Senate Bill 980, DNA testing companies would have to abide by strict guidelines for authorization forms for genetic tests. The measure also creates civil penalties for companies that fail to comply with the provisions in the Act.
Maryland and New York have long had stringent laws regulating how genetic tests can be marketed to consumers on the books and Illinois passed new laws to tighten how genetic tests can be used late last year.
“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.