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119-s-863119th CongressWALLET

Genomic Data Protection Act

Sponsored By: Senator Cassidy, Bill [R-LA]

Introduced

Summary

Would give consumers strong control over their genomic data held by direct-to-consumer testing companies. It would require clear notices, easy access to data, and a way to delete accounts and ask companies to destroy biological samples.

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  • Consumers: Individuals could access their genomic data and request deletion of their account and destruction of any biological sample. Companies would have to fulfill and notify consumers of deletion or destruction within 30 days.
  • Researchers and public health: Deidentified genomic data could still be shared for medical or scientific research if handled in line with HIPAA privacy rules and with contractual limits on reidentification.
  • Direct-to-consumer companies: Firms would need a simple, visible mechanism to provide rights through their main customer communication channel and must notify consumers at least 30 days before a sale or acquisition about the buyer and how to exercise rights.
  • Law enforcement and legal exceptions: Companies could refuse deletion when data is subject to a warrant, subpoena, court order, or other legal retention requirement.
  • Enforcement: Violations would be treated as unfair or deceptive acts under the Federal Trade Commission Act and the FTC would be empowered to enforce the rules and issue implementing regulations.

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Bill Overview

Analyzed Economic Effects

4 provisions identified: 3 benefits, 0 costs, 1 mixed.

FTC enforcement and rulemaking powers

If enacted, the bill would let the Federal Trade Commission treat violations as unfair or deceptive acts under the FTC Act. The FTC would have the same powers, penalties, and duties it has now to enforce these rules. The FTC could write rules to carry out the law within one year after enactment. The provision would not limit the FTC's other authorities.

Clear definitions for genomic terms

If enacted, the bill would define key terms used in the law. "Biological sample" would mean body material that can contain DNA, like blood or saliva. "Consumer" would mean someone who gives a sample to a direct-to-consumer genomic testing company. "Deidentified genomic data" would mean data that cannot be linked to a person if certain protections and contracts are in place. The bill would allow deidentified data to be used for medical or scientific research that follows HIPAA section 264(c).

Control over your genomic data

If enacted, companies that sell direct-to-consumer genomic tests would have to give you an easy way to access your genomic data. You would be able to delete your account and ask the company to destroy your biological sample. Companies could refuse only when a warrant, subpoena, court order, or a law requires them to keep the data. Companies must fulfill deletion or destruction requests within 30 days of your request and notify you within 30 days after they delete or destroy the data. If a company is sold while your request is pending, the buyer must comply and the 30-day clock starts from your original request. Companies must give at least 30 days' notice before a sale and explain how to use your rights under the new owner. Notices must be clear and must say that deidentified genomic data may be shared for research that follows HIPAA rules.

Federal and state law preserved

If enacted, the bill would not change other federal laws unless the bill itself specifically says so. State laws would still apply unless they conflict with this bill. If a state law conflicts, this bill would override the state law only to the extent of the conflict.

Sponsors & CoSponsors

Sponsor

Cassidy, Bill [R-LA]

LA • R

Cosponsors

  • Sen. Peters, Gary C. [D-MI]

    MI • D

    Sponsored 3/5/2025

Roll Call Votes

No roll call votes available for this bill.

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