Requires a direct-to-consumer genetic testing company, as defined, to provide a consumer with certain information regarding the company’s policies and procedures regarding use of genetic data.

Rhode Island Genetic Information Privacy Act – Plain English Summary

This bill would require companies that sell at-home DNA testing kits directly to consumers — like ancestry or health testing services — to be upfront and transparent about how they collect, store, use, and share customers' genetic data. Before a customer submits their DNA sample, the company would need to clearly explain its privacy policies in plain, understandable language, giving people the information they need to make an informed decision about participating.

The bill affects Rhode Island residents who use direct-to-consumer genetic testing services, as well as the companies that provide those services. Under this legislation, companies would be required to tell customers things like whether their genetic data might be shared with third parties (such as researchers, insurance companies, or law enforcement), how long the data will be kept, and what options customers have to delete their information. The goal is to make sure people understand exactly what they're agreeing to when they send in a DNA sample.

Currently, the bill has been introduced in the Rhode Island House of Representatives and referred to the House Judiciary Committee. The committee has recommended it be held for further study, meaning lawmakers want more time to review and potentially revise the details before moving it forward. It is scheduled for additional consideration in April 2026. No final vote has been taken yet.