California Senate Passes Bill Establishing the Genetic Information Privacy Act

HIPAA Journal

Steve Alder

A bill (SB-980) that establishes the Genetic Information Privacy Act has been passed by the California Senate and now awaits California Governor Gavin Newsom’s signature.

The Genetic Information Privacy Act will introduce new requirements for companies offering direct-to-consumer genetic tests to protect consumer privacy and safeguard personal and genetic data.

Currently, direct-to-consumer genetic testing services are largely unregulated. There is concern that the practices of companies that offer these services could potentially expose sensitive genetic information and that outside parties could exploit the use of genetic data for questionable purposes, such as mass surveillance, tracking individuals without authorization, or disclose genetic data resulting in discrimination against certain individuals. In contrast to many elements of “protected health information”, genomic data is stable and undergoes little change over the lifetime of an individual, so any disclosures of genetic data could have life-long consequences for the individual concerned.

The Genetic Information Privacy Act will apply to...

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