California Expands Consumer Protections for Genetic Testing

23andMe knows you care about privacy, and they have been working hard to deliver other promises of transparency and choice, even beyond your experience at 23andMe.

23andMe is excited to share that California recently enacted a new law to protect consumers’ genetic data privacy. 23andMe has worked hard with the Coalition for Genetic Data Protection to make this happen in California, as well as Utah and Arizona earlier this year. 23andMe hopes to see this legislation become a model for genetic privacy legislation nationally.

23andMe believes every consumer deserves the same level of genetic data privacy, and California’s new Genetic Information Privacy Act (“GIPA”), signed by Governor Newsom on October 6, 2021, builds on industry best privacy protections adopted by the state two years ago under the California Consumer Privacy Act (“CCPA”). GIPA requires genetic testing services to provide consumers with transparency and choice, which are 23andMe’s core privacy principles that have guided their privacy program from the beginning.

Now, all consumers in California, Utah, and Arizona will be afforded the same level of privacy protection regardless of whether the genetic testing company with which they tested adheres to the best practices or not. Importantly, genetic testing companies include those that provide genetic interpretation services, too.

The California, Utah, and Arizona laws include many the same protections that 23andMe has long offered its customers, including:

Requiring separate express consent for genetic data to be: used for scientific research purposes; shared with a third party; used for marketing purposes

If a customer opts in to research, offering a simple way to opt-out of research at any time

Giving customers a clear and easy way to close their accounts and delete their data, if they choose

Requiring destruction of a customer’s biological sample within 30 days of the customer’s request

Prohibiting genetic testing companies from sharing genetic data with employers or providers of insurance for any reason

Requiring genetic testing companies to provide clear and complete information about their privacy practices and protocols.

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