Your DNA, your choice: Congress mandates deletion rights for genetic data

What it does

This bill requires direct-to-consumer genomic testing companies (like ancestry and health DNA services) to give consumers the right to delete their genetic data and destroy biological samples within 30 days of request, with clear notice of these rights and notification if the company is acquired. The FTC enforces violations as unfair or deceptive practices, but companies can refuse deletion if a court order or legal requirement mandates retention. Deidentified data used for research is exempt from deletion rights.

Why we flagged it

The bill's core mechanism is a consumer right to delete personal genetic data held by commercial testing companies, enforced by the FTC. This is a straightforward privacy protection measure with no hidden deregulation or carve-outs.

What the text implies

• Deidentified data used for medical/scientific research remains exempt from deletion, creating a potential loophole: companies could deidentify data and retain it indefinitely for research partnerships, limiting the practical scope of consumer deletion rights.
• The bill does not address secondary markets: genomic data already sold or licensed to third parties before a deletion request may not be retrievable, leaving consumers with limited recourse for data already in circulation.
• Acquisition clause (30-day notice + continued compliance) may incentivize companies to sell or transfer data before acquisition to avoid new owner liability, potentially accelerating data monetization.
• No explicit private right of action: enforcement is FTC-only, meaning consumers cannot sue directly for violations—they depend on agency action, which may be slow or selective.

Section numbers refer to the bill text the analysis read — linked under Primary records below.

Who it affects

Ordinary consumers gain enforceable rights to control and delete their own genetic data, addressing a significant privacy gap in an industry where data is often retained indefinitely and sold for research or other purposes. The 30-day deletion window and FTC enforcement provide concrete remedies.

Named in the bill

Federal Trade Commission (FTC), Direct-to-consumer genomic testing companies, Health Insurance Portability and Accountability Act (HIPAA), Public Health Service Act

Where it stands

1 cosponsor: 1 Democrats.

• Mar 5, 2025 — Introduced · Congress.gov: “Introduced in Senate”
• Mar 5, 2025 — Referred to Senate Committee on Commerce, Science, and Transportation · Congress.gov: “Read twice and referred to the Committee on Commerce, Science, and Transportation”

Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.

Money around this bill

1 lobbying clients named this bill on 2 disclosure filings across 2 quarters, Dec 2025 to Jun 2026. Those filings disclosed $60,000 in lobbying spend. A filing names 2 bills on average, so that figure is what each filing reported, not a share belonging to this bill.

More lobbying clients named this bill than 0% of bills with at least one filing.

Bill Cassidy, the sponsor, reported $1,329,254 in PAC receipts in the 2026 cycle.

• Ancestry — $60,000 on 2 filings

Lobbying Disclosure Act filings through Jul 20, 2026. A filing shows who paid to lobby on a bill it names, not what changed.