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 direct-to-consumer genetic testing services — think companies where you mail in a saliva sample to learn about your ancestry or health traits — to be upfront and transparent with their customers about how they handle genetic data. These companies would need to clearly explain their policies and procedures for collecting, storing, using, and potentially sharing the genetic information they gather from customers.

If you've ever used one of these at-home DNA testing kits, this bill would directly affect you as a consumer. Before or when you sign up, the company would be required to tell you things like what they do with your genetic data, whether it can be shared with third parties (such as researchers, insurers, or law enforcement), and what your rights are regarding your own genetic information. The goal is to make sure customers have enough clear information to make informed decisions about using these services.

The bill would primarily place new responsibilities on the genetic testing companies themselves. They would need to make sure their privacy policies are accessible, understandable, and cover specific topics required by the law. This could affect well-known companies operating in Rhode Island, such as 23andMe or AncestryDNA, as well as any similar businesses. The bill has been introduced and referred to the Rhode Island Senate Commerce Committee, where it will be reviewed before any further action is taken.