Landmark Privacy Proposal To Give Consumers Control Over Their Genetic Data Advances
(Sacramento, CA) – Senator Thomas J. Umberg (D-Santa Ana) announced today that his measure, Senate Bill 980 (SB 980) – which 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 -- passed the California Assembly’s Privacy and Consumer Protection Committee yesterday. The bill’s surprising bipartisan approval came on the heels of an amendment debated and accepted in the Committee which closed the gap on differences between businesses operating in this arena and the consumer advocates seeking to protect a person’s individual data.
“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 States Department of Defense that members of the nation’s military avoid the use of these products.”
On July 19 of this year, a massive security breach at a company exposed the DNA profiles of more than a million people to law enforcement agencies and forced the service to temporarily cease operations. The company, GEDmatch, compares DNA data files from different testing companies to find a consumer’s family tree and ancestral DNA matches. Several media outlets have published additional stories in recent months of genetic data also being improperly used to conduct drug research, discriminate against possible consumers in regards to insurance products, or being stored on hackable private servers. Other news of note recently is the genealogy company Ancestry was acquired by investment firm Blackstone for $4.7 billion, changing ownership of the company, and its collection of user-submitted DNA, from a set of investment firms to another private equity firm.
The California Consumer Privacy Act (CCPA) regulates (among other things) DTC genetic companies by allowing consumers to request information on how their data is being used and to opt out if they so wish. However, this law does not solve for the fact that current authorization forms are confusing and consumers often lack clarity about consents they are providing.
"DNA testing can help individuals learn more about their health and heritage, but sensitive genetic data must be handled with care. SB 980 would create important consumer protections and standardize emerging best practices for data protection in the direct to consumer genetics industry,” said John Verdi VP of Policy, the Future of Privacy Forum. “The bill takes a well balanced approach, promoting transparency, consent, and consumer controls in a way that companies can operationalize and individuals can understand."
Umberg’s measure, Senate Bill 980, creates strict guidelines for defining the opt-in consent for companies and users 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, and it will prohibit companies from advertising to consumers based on their genetic test information. 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-party exploitation. “Forcing these companies to clarify their consent forms and requiring them to obtain authorization for any genetic data disclosure will reassure California consumers that their most personal information is safe,” noted Senator Umberg.
Senate Bill 980 will next be heard by the Assembly Committee on Appropriations in the coming weeks.
Senator Thomas J. Umberg represents the 34th Senate District, which includes the cities of Anaheim,
Fountain Valley, Huntington Beach, Garden Grove, Long Beach, Los Alamitos, Midway City, Orange, Santa Ana, Seal Beach, and Westminster. Umberg is a retired U.S. Army Colonel, former federal prosecutor, and small businessman. He and his wife, Brigadier General Robin Umberg, USA (ret.), live in Orange County.