Don’t Sell My DNA Act
- Bill Number
- S. 1916
- Origin Chamber
- Senate
- Congress
- 119th Congress, Session 1
- Policy Area
- Finance and Financial Sector
- Status
- Introduced
- Latest Action
- 2025-05-22: Read twice and referred to the Committee on the Judiciary.
- Last Updated
- 2026-05-27T20:51:56Z
AI-Generated Summary
Purpose
The "Don't Sell My DNA Act" (S. 1916) aims to protect individuals' genetic information during bankruptcy proceedings by preventing its unauthorized use, sale, or lease without consent and requiring its secure deletion when not disposed of. It builds on existing privacy laws to ensure genetic data—unique biological details like DNA sequences or family medical history—is treated with heightened sensitivity in financial restructurings.
Key Provisions
- Expanded Definition of Sensitive Information: Amends Section 101 of the Bankruptcy Code to include "genetic information" (as defined under the Genetic Information Nondiscrimination Act of 2008, or GINA, which covers DNA tests, genetic analyses, and related family health history) as a type of personal information presumed to have significant value and requiring special handling.
- Restrictions on Use, Sale, or Lease: Under Section 363 (which governs asset sales outside normal business operations):
- Prohibits approval of any use, sale, or lease of genetic information unless all affected individuals (including those not directly involved in the bankruptcy case) provide affirmative written consent after the case begins.
- Requires actual prior written notice to every person whose genetic information is involved before any such transaction can be finalized.
- Mandatory Deletion of Unused Data: Adds to Section 1107 (outlining duties of trustees or debtors managing the case) a requirement for trustees or debtors in possession to securely delete any genetic information that belongs to the bankruptcy estate but is not sold, leased, or otherwise disposed of. Deletion methods must follow court-approved standards, such as the National Institute of Standards and Technology (NIST) guidelines for securely erasing data from media (e.g., hard drives or files).
- Effective Date and Scope: Takes effect immediately upon enactment and applies to all bankruptcy cases pending, commenced, or reopened on or after that date.
Significant Changes to Existing Law
- Prior Law: The Bankruptcy Code already protects certain personal information (like health or financial records) in asset sales by requiring courts to ensure no violation of non-bankruptcy laws, but it did not specifically address genetic information or mandate consent and notice for it.
- New Elements: Introduces explicit prohibitions on handling genetic data without consent, adds a notice requirement, and imposes deletion obligations—changes that elevate genetic information's status beyond general personal data, integrating GINA's definitions directly into bankruptcy rules. This closes a gap where sensitive biotech or health-related assets could be sold without individual protections.
Potential Impacts
- On Government Agencies: Bankruptcy courts and the U.S. Trustee Program (which oversees cases) will need to enforce new consent, notice, and deletion rules, potentially increasing administrative workloads and requiring updated procedures or training.
- On Citizens: Individuals whose genetic data is held by a bankrupt company (e.g., patients of a failing clinic or customers of a DNA testing firm) gain stronger privacy safeguards, reducing risks of data misuse for discrimination or commercial exploitation. However, it may complicate or delay bankruptcy resolutions if consents are hard to obtain.
- On International Relations: Minimal direct impact, though it could influence how U.S. firms handle genetic data in cross-border bankruptcies, aligning with global privacy standards like Europe's GDPR (General Data Protection Regulation) for better international data flows.
- Broader Effects: May slow asset sales in industries like biotech or genomics, affecting creditor recoveries, but promotes trust in data privacy during economic distress.
Main Stakeholders Affected
- Individuals: Primary beneficiaries—those with genetic information (e.g., via ancestry tests, medical records, or research participation)—who now have veto power over data sales and rights to notice and deletion.
- Businesses and Debtors: Companies in bankruptcy, especially in health, biotech, or consumer genetics sectors (e.g., 23andMe-like firms), face stricter rules on asset disposal, potentially raising compliance costs.
- Trustees and Creditors: Bankruptcy trustees, debtors in possession, and creditors must navigate consent processes, which could prolong cases but ensure legal compliance.
- Courts and Regulators: Judiciary committees and agencies like NIST will guide implementation, with oversight from bodies enforcing GINA.
Notable Legal, Constitutional, or Political Implications
- Legal: Strengthens integration of privacy statutes (like GINA) into bankruptcy law, potentially setting precedents for other sensitive data types (e.g., biometrics). It emphasizes "affirmative consent," a standard from consumer protection laws, which could lead to more litigation if consents are disputed.
- Constitutional: Reinforces privacy rights under the Fourth Amendment (protection against unreasonable searches) and implied rights to informational privacy, treating genetic data as akin to medical records without needing new constitutional rulings.
- Political: Bipartisan support (introduced by Sens. Cornyn, Klobuchar, and Grassley) highlights consensus on genetic privacy amid rising concerns over data commercialization. It may inspire similar protections in other federal laws, but critics could argue it burdens bankruptcy efficiency, affecting economic policy debates. No overt partisan bias in the text; focuses on individual rights over corporate interests.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (4)
Sen. Klobuchar, Amy [D-MN], Sen. Grassley, Chuck [R-IA], Sen. Coons, Christopher A. [D-DE], Sen. Hyde-Smith, Cindy [R-MS]
Recent Actions
- 2025-05-22: Read twice and referred to the Committee on the Judiciary.
- 2025-05-22: Introduced in Senate
Bill Versions
- Don’t Sell My DNA Act — issued 2025-05-22 — PDF (4 pages)