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California expands consumer privacy rights to include genetic data

Privacy/Cyber Risk & Data Security State Issues State Legislation California Consumer Protection

Privacy, Cyber Risk & Data Security

On October 6, the California governor signed SB 41, which requires direct-to-consumer genetic testing companies to provide consumers with information about the collection, use, maintenance, and disclosure of genetic data. Under the Genetic Information Privacy Act (GIPA), companies are required to honor a consumer’s revocation of consent and destroy a consumer’s biological sample within 30 days after the consent has been revoked. Companies must also obtain a consumer’s express consent for collection, use, or disclosure of an individual’s genetic data. GIPA also requires companies to comply with all applicable federal and state laws for disclosing genetic data without a consumer’s express consent, and companies must “implement and maintain reasonable security procedures and practices to protect a consumer’s genetic data against unauthorized access, destruction, use, modification, or disclosure, and develop procedures and practices to enable a consumer to access their genetic data, and to delete their account and genetic data, as specified.” Violations of the law may result in civil penalties ranging from $1,000 to $10,000. Exempt from GIPA’s provisions is medical information governed by the Confidentiality of Medical Information Act, or medical information collected and used by business associates of a covered entity governed by the privacy, security, and data breach notification rules issued by the U.S. Department of Health and Human Services.

Earlier on October 5, the governor also signed AB 825, which expands the definition of “personal information” to include genetic data, regardless of its format. Under existing law, any agency that owns or licenses computerized data that includes personal information is required to immediately disclose a security breach upon discovery to California residents who may have been impacted. Agencies are also required to implement and maintain reasonable security procedures and practices.

Both bills take effect January 1, 2022.

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