The proposed "Genetic Information Privacy Act" aims to regulate direct-to-consumer genetic testing services in Rhode Island by addressing the risks associated with unregulated genetic testing, such as the potential exposure of personal and genetic information. The bill establishes definitions for key terms like "consumer," "genetic data," and "express consent," and mandates that genetic testing companies provide clear information about their data practices.

It requires these companies to obtain express consent from consumers for the collection, use, and disclosure of their genetic data and biological samples, thereby enhancing consumer protection and privacy. The legislation outlines the responsibilities of genetic testing companies to safeguard consumer data, including implementing reasonable security procedures and practices to protect genetic data against unauthorized access, destruction, use, modification, or disclosure. It also requires companies to allow consumers to access, delete, or revoke consent regarding their genetic data.

The act prohibits discrimination against consumers exercising their rights under the act and introduces civil penalties for violations, with amounts ranging from $1,000 for negligent violations to $10,000 for willful violations. The bill clarifies that it does not diminish existing privacy protections under state and federal laws and includes exclusions for certain medical information, research activities, and other specified circumstances. The act will take effect upon passage.