Bill > S2203

This bill, titled the "Genetic Information Privacy Act," mandates that direct-to-consumer genetic testing companies, which are businesses offering genetic testing products or services directly to individuals and analyzing their genetic data, must provide consumers with clear and comprehensive information about their policies for collecting, using, maintaining, and disclosing genetic data, which is defined as any data derived from a biological sample (like DNA) that concerns genetic material. Crucially, these companies must obtain a consumer's "express consent," meaning their explicit permission given after clear notice, for the collection, use, and disclosure of their genetic data, including separate consent for specific purposes like sample storage, sharing with third parties, and marketing. The bill also requires companies to implement reasonable security measures, allow consumers to access and delete their data, and prohibits discrimination against consumers for exercising their rights under this act, while also restricting the disclosure of genetic data to entities involved in health insurance, life insurance, or employment decisions, with specific exceptions. This legislation aims to address concerns about the unregulated nature of genetic testing and the potential misuse of sensitive genetic information, and it will take effect upon passage.

Business and Industry

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