Bill > HB1530

This bill, known as the Genetic Information Privacy Act, establishes comprehensive protections for consumers' genetic data collected by direct-to-consumer genetic testing companies in Pennsylvania. The legislation requires these companies to obtain explicit, separate consent from consumers for collecting, using, and sharing genetic information, including consent for initial testing, data transfer to third parties, retention of biological samples, research purposes, and marketing. Companies must provide clear privacy policies, develop robust security programs to protect genetic data, and offer consumers the ability to access, delete, and destroy their genetic information. The bill prohibits companies from disclosing genetic data to health insurers, life insurers, long-term care insurers, and employers without written consumer consent. The Office of Attorney General can enforce the law by bringing civil actions with potential penalties of $2,500 per violation, plus damages and legal costs. The law does not apply to certain scenarios such as health information already protected by HIPAA, law enforcement investigations, or genetic data from unidentified deceased individuals. The act will take effect 60 days after passage, aiming to safeguard the privacy and personal genetic information of Pennsylvania residents in an era of increasing direct-to-consumer genetic testing.

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https://www.legis.state.pa.us/cfdocs/billinfo/bill_history.cfm?syear=2025&sind=0&body=H&type=B&bn=1530