Bill > S863

This bill establishes comprehensive privacy protections for consumers' genomic data by requiring direct-to-consumer genomic testing companies to provide clear mechanisms for individuals to access and delete their genetic information. The bill mandates that these companies offer a simple way for consumers to view their genomic data, delete their account and associated genetic information, and request the destruction of their biological samples (which includes tissues, blood, saliva, etc.). Companies must provide clear notifications about these rights and disclose that deidentified genomic data may be used for medical or scientific research. The bill requires companies to process deletion requests within 30 days and provides specific notifications if the company is being purchased or acquired. There are exceptions to deletion rights for data subject to legal orders or required by other regulations. The Federal Trade Commission (FTC) will enforce these provisions, treating violations as unfair or deceptive practices. The bill defines key terms like "genomic data" extensively, covering not just DNA but also related genetic information, and explicitly states that it does not preempt existing federal or state laws unless there is a direct conflict. Importantly, the bill aims to give consumers more control over their sensitive genetic information while still allowing for important scientific research.

Transportation and Infrastructure

https://www.congress.gov/bill/119th-congress/senate-bill/863/all-info