California Governor Vetoes Genetic Information Privacy Act
Data Privacy & Security and Health & Life Sciences Alert 09/29/20 Meghan C. O'Connor, Gregory J. Leighton
10/11/21 Update: California Governor Gavin Newsom signed into law the Genetic Information Privacy Act on 10/6/21. More available here.
On September 25, California Governor Gavin Newsom vetoed Senate Bill (SB) 980, which would create the Genetic Information Privacy Act (GIPA). SB 980 would create a new privacy and security regulatory scheme for direct-to-consumer genetic testing companies. In his note, Governor Newsom noted that while he supports the primary goal of GIPA to protect genetic data, “the broad language in this bill risks unintended consequences, as the ‘opt-in’ provisions of the bill could interfere with laboratories’ mandatory requirement to report COVID-19 test outcomes to local public health departments.” For more on the requirements of SB 980, see our summary and analysis.
Governor Newsom directed the California Health and Human Services Agency and the Department of Public Health to work with the California legislature in order to create legislation that would achieve the privacy aims of SB 980 while preventing inadvertent impacts on COVID-19 testing efforts.
Direct-to-consumer genetic testing companies and other companies that collect, use, maintain, or disclose genetic data collected or derived from a direct-to-consumer genetic testing product or service or directly provided by a consumer should be prepared for a privacy and security regulatory scheme with an updated bill. We will continue to monitor developments.
For more information regarding progress of GIPA, how it may affect your business, implementing a compliant data privacy and security program, or de-identifying data, contact your Quarles & Brady attorney or: