The General Assembly Raised Bill No. 5128, effective October 1, 2026, establishes new regulations for direct-to-consumer genetic testing companies. It defines key terms such as "biological sample," "consumer," "de-identified data," and "genetic data," and asserts that consumers have a property right to their biological samples and genetic testing results. This right includes exclusive control over the collection, use, retention, and destruction of their biological samples and genetic data. The bill mandates that companies must obtain express consent from consumers before collecting or using their genetic data and must disclose their policies regarding data handling.
Additionally, the bill outlines specific obligations for direct-to-consumer genetic testing companies, including the requirement to implement reasonable security measures to protect consumer data, provide consumers with access to their genetic data, and ensure that genetic data is not disclosed to employers or insurers without consent. Violations of these provisions are classified as unfair or deceptive trade practices. Overall, the bill aims to enhance consumer rights and protections in the realm of genetic testing and data privacy.