On September 25, 2020, California Governor Gavin Newsom vetoed Senate Bill 980 (“SB 980″), California’s “Genetic Information Privacy Act,” which sought to regulate direct-to-consumer genetic marketing companies and other entities that collect and process consumer genetic information. Newsom vetoed the bill because he believed the broad language of the bill conflicts with current COVID-19 testing measures and requirements. However, Newsom agrees “with the primary goal of this bill” and requests that the California Legislature work with the California Health and Human Services Agency and the Department of Public Health to create a bill that does not impede efforts to overcome COVID-19 but also affords consumer genetic information strong privacy protections.

SB 980 reflects the growing trend, both at the federal and state level, to protect consumer genetic information. For example, in 2017 and 2019 the Federal Trade Commission provided guidance regarding consumer genetic testing. As collection of consumer genetic information expands in the private sector, states are creating and amending laws to include biometric information as a protected category of information. Some states have amended or created bills to protect consumer genetic information. For instance, the Illinois legislature amended its Genetic Information Privacy Act, so that the definition of “genetic testing” includes direct-to-consumer commercial genetic testing companies, barring the companies from sharing genetic testing information with insurers without consumer written consent. As the technology and desire for genetic testing grows, the federal government and states are expected to continue to enact laws designed to protect the confidentiality of individuals’ sensitive genetic information.   

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Mary Colleen Fowler, a 2020 graduate of the University of Kansas School of Law, contributed to this post.  Ms. Fowler is a law clerk with Fey LLC.

Laura Fey

Laura Clark Fey, Privacy Law Specialist (IAPP), is the principal at Fey LLC.

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