Genomic Data Protection Act
The source supplies the latest action, but no lifecycle stage.
Latest action (5 Dec 2024): Read twice and referred to the Committee on Commerce, Science, and Transportation.
What this bill does
This bill, the Genomic Data Protection Act, would require companies that provide direct-to-consumer genomic testing services to allow individuals to access and delete their genomic data and request the destruction of their biological samples. Companies would also need to notify consumers about their rights and provide clear information about how deidentified genomic data might be used for research. If a genomic testing company is sold, consumers would need to be notified at least 30 days beforehand.
The act specifies that these requirements would apply to "direct-to-consumer genomic testing companies," defined as entities that sell, analyze, collect, use, maintain, or disclose genomic data directly to consumers, with an exclusion for healthcare professionals acting for diagnosis or treatment. The Federal Trade Commission (FTC) would be responsible for enforcing these provisions, treating violations as unfair or deceptive practices.
The bill was introduced in the Senate in December 2024 and has been referred to the Committee on Commerce, Science, and Transportation. As it has just been introduced, it would need to be considered by the committee and then potentially passed by the Senate and the House of Representatives before it could become law.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Timeline
5 Dec 2024
Read twice and referred to the Committee on Commerce, Science, and Transportation.
Common questions
- What does S. 5433 do?
- This bill, the Genomic Data Protection Act, would require companies that provide direct-to-consumer genomic testing services to allow individuals to access and delete their genomic data and request the destruction of their biological samples. Companies would also need to notify consumers about their rights and provide clear information about how deidentified genomic data might be used for research. If a genomic testing company is sold, consumers would need to be notified at least 30 days beforehand. The act specifies that these requirements would apply to "direct-to-consumer genomic testing companies," defined as entities that sell, analyze, collect, use, maintain, or disclose genomic data directly to consumers, with an exclusion for healthcare professionals acting for diagnosis or treatment. The Federal Trade Commission (FTC) would be responsible for enforcing these provisions, treating violations as unfair or deceptive practices. The bill was introduced in the Senate in December 2024 and has been referred to the Committee on Commerce, Science, and Transportation. As it has just been introduced, it would need to be considered by the committee and then potentially passed by the Senate and the House of Representatives before it could become law.
- Has S. 5433 become law?
- The source does not supply a confirmed lifecycle stage for S. 5433. Check the latest action and official source below.
- Who sponsored S. 5433?
- S. 5433 was sponsored by Sen. Cassidy, Bill [R-LA] (R-LA), with 1 cosponsor.
- What's the latest action on S. 5433?
- Read twice and referred to the Committee on Commerce, Science, and Transportation. (5 Dec 2024).
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