Legis Daily

Genomic Data Protection Act

USA119th CongressS-863| Senate 
| Updated: 3/5/2025
Bill Cassidy

Bill Cassidy

Republican Senator

Louisiana

Cosponsors (1)
Gary C. Peters (Democratic)

Commerce, Science, and Transportation Committee

  • Introduced
  • In Committee
  • On Floor
  • Passed Chamber
  • Enacted
This bill, titled the Genomic Data Protection Act, establishes significant consumer rights regarding their genomic data and biological samples held by direct-to-consumer genomic testing companies. It mandates that these companies provide a simple and effective mechanism for consumers to access their genomic data , delete their accounts and associated genomic data , and request the destruction of their biological samples . Companies must fulfill these deletion or destruction requests within 30 days of the consumer's request and subsequently notify the consumer of the completion. The legislation also requires companies to provide clear and conspicuous notice of these consumer rights and to disclose that deidentified genomic data may be shared for medical or scientific research, consistent with HIPAA privacy regulations. Should a company be purchased or acquired, it must notify consumers at least 30 days prior, and the acquiring entity is obligated to comply with any outstanding deletion or destruction requests. Exceptions to these deletion rights apply if the information is subject to a warrant, subpoena, court order, or other legal or regulatory retention requirements. The Federal Trade Commission is empowered to enforce these provisions, treating violations as unfair or deceptive acts or practices, and may promulgate necessary rules within one year of enactment. The bill defines key terms such as "genomic data" and "direct-to-consumer genomic testing company," specifically excluding healthcare professionals acting for diagnosis or treatment, and preserves existing federal and state laws unless there is a direct conflict.
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Timeline

Bill from Previous Congress

S 118-5433
Genomic Data Protection Act
Mar 5, 2025
Introduced in Senate
Mar 5, 2025
Read twice and referred to the Committee on Commerce, Science, and Transportation.
  • Bill from Previous Congress

    S 118-5433
    Genomic Data Protection Act


  • March 5, 2025
    Introduced in Senate


  • March 5, 2025
    Read twice and referred to the Committee on Commerce, Science, and Transportation.

Commerce

Genomic Data Protection Act

USA119th CongressS-863| Senate 
| Updated: 3/5/2025
This bill, titled the Genomic Data Protection Act, establishes significant consumer rights regarding their genomic data and biological samples held by direct-to-consumer genomic testing companies. It mandates that these companies provide a simple and effective mechanism for consumers to access their genomic data , delete their accounts and associated genomic data , and request the destruction of their biological samples . Companies must fulfill these deletion or destruction requests within 30 days of the consumer's request and subsequently notify the consumer of the completion. The legislation also requires companies to provide clear and conspicuous notice of these consumer rights and to disclose that deidentified genomic data may be shared for medical or scientific research, consistent with HIPAA privacy regulations. Should a company be purchased or acquired, it must notify consumers at least 30 days prior, and the acquiring entity is obligated to comply with any outstanding deletion or destruction requests. Exceptions to these deletion rights apply if the information is subject to a warrant, subpoena, court order, or other legal or regulatory retention requirements. The Federal Trade Commission is empowered to enforce these provisions, treating violations as unfair or deceptive acts or practices, and may promulgate necessary rules within one year of enactment. The bill defines key terms such as "genomic data" and "direct-to-consumer genomic testing company," specifically excluding healthcare professionals acting for diagnosis or treatment, and preserves existing federal and state laws unless there is a direct conflict.
View Full Text

Suggested Questions

Get AI-generated questions to help you understand this bill better

Timeline

Bill from Previous Congress

S 118-5433
Genomic Data Protection Act
Mar 5, 2025
Introduced in Senate
Mar 5, 2025
Read twice and referred to the Committee on Commerce, Science, and Transportation.
  • Bill from Previous Congress

    S 118-5433
    Genomic Data Protection Act


  • March 5, 2025
    Introduced in Senate


  • March 5, 2025
    Read twice and referred to the Committee on Commerce, Science, and Transportation.
Bill Cassidy

Bill Cassidy

Republican Senator

Louisiana

Cosponsors (1)
Gary C. Peters (Democratic)

Commerce, Science, and Transportation Committee

Commerce

  • Introduced
  • In Committee
  • On Floor
  • Passed Chamber
  • Enacted