Bill > HB1179

This bill, called the Genetic Materials Privacy and Compensation Act, establishes comprehensive protections for individuals' genetic information by requiring genetic testing entities to obtain explicit consent before collecting, using, or sharing genetic material. The bill defines genetic material broadly as DNA and genetic information that can identify an individual or indicate disease risks, and it mandates that testing entities must prominently disclose the type of genetic material being collected, who it will be shared with, and the purpose of sharing. Companies must obtain affirmative express consent from individuals before collecting genetic material and provide clear instructions on how consent can be revoked. The bill prohibits insurance companies and employers from requesting genetic material from databases, and it requires genetic testing entities to destroy genetic material upon individual request or within 120 days of the law's effective date. Additionally, companies must establish a comprehensive privacy program to protect genetic information, and individuals are guaranteed inherent ownership rights to their genetic material. Violations of the act will be considered unfair trade practices, subject to enforcement under consumer protection laws, and individuals retain the right to seek remedies through various legal channels. The bill aims to provide transparency, protect privacy, and ensure individuals have control over their genetic information.

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https://www.legis.state.pa.us/cfdocs/billinfo/bill_history.cfm?syear=2025&sind=0&body=H&type=B&bn=1179