Landmark Privacy Proposal To Give Consumers Control Over Their Genetic Data Advances To Governor Newsom’s Desk For Signature

SACRAMENTO, CA — Senator Thomas J. Umberg (D-Santa Ana) announced today that his measure, Senate Bill 980 (SB 980)  passed the California State Assembly and will soon go to the desk of Governor Gavin Newsom to be signed into law. SB 980 would assure consumers that Direct-to-Consumer (DTC) genetic testing companies will use their genetic data solely for the purposes to which they have consented. This bill has support from various privacy and consumer groups, including the American Civil Liberties Union (ACLU), Electronic Frontier Foundation, Consumer Reports, Consumer Action, and Privacy Clearing House, and the Center for Genetics and Society.

“At-home DNA tests have provided people with the ability to seek meaningful connections to long-lost families or their own cultural and religious histories. Most people have no idea that this data can then legally be shared with third parties or potentially used against them in a variety of ways” said Senator Umberg “Genetic testing companies have, to date, gone largely unregulated by either state or national governments. This has led to breaches of sensitive private biological information and a suggestion by even the United...