Substitute House Bill No. 5128 seeks to enhance consumer protection and privacy in the realm of direct-to-consumer genetic testing by establishing clear definitions and rights for consumers regarding their biological samples and genetic data. Effective October 1, 2026, the bill introduces key terms such as "biological sample," "consumer," "genetic data," and "direct-to-consumer genetic testing company." It grants consumers a property right over their biological samples and genetic testing results, allowing them exclusive control over the collection, use, retention, and disclosure of their genetic information. Companies are required to disclose their policies on genetic data handling and must obtain express consent from consumers before collecting or using their genetic data.

The bill also imposes specific obligations on genetic testing companies, including the implementation of reasonable security measures to protect consumer data and ensuring consumers have access to their genetic data. Companies are prohibited from disclosing genetic data to third parties, such as employers and insurers, without consumer consent. Additionally, the bill outlines procedures for consumers to access, delete, or revoke consent for their genetic data. Violations of these provisions are classified as unfair or deceptive trade practices under the Connecticut Unfair Trade Practices Act (CUTPA), allowing for enforcement by the Department of Consumer Protection. Overall, the bill aims to create a more secure and transparent environment for consumers engaging with genetic testing services.