On October 6, 2021, California Governor Gavin Newsome signed Senate Bill 41 to enact the new Genetic Information Privacy Act (the “Act”). The Act is intended to safeguard the confidentiality and integrity of California consumers’ genetic data held by direct-to-consumer genetic testing companies. The Act goes into effect on January 1, 2022.
The Act will require direct-to-consumer genetic testing companies to obtain consumers’ express consent before collecting, using and disclosing genetic data to any third party, and to ensure that consumers are provided with “clear and complete” information regarding companies’ policies and procedures related to collection, use, maintenance and disclosure of genetic data. Direct-to-consumer genetic testing companies will be forced to honor consumers’ revocation of consent, including by destroying biological samples within 30 days of the consent being revoked. Companies must also establish security procedures and practices that not only protect against unauthorized access to genetic data but also enable consumers to access and delete information related to their genetic data and related accounts.
Civil penalties for willful violations of these provisions will range between $1,000 to $10,000 per violation.