Don’t Sell My DNA Act
- Bill Number
- H.R. 4492
- Origin Chamber
- House
- Congress
- 119th Congress, Session 1
- Policy Area
- Finance and Financial Sector
- Status
- Introduced
- Latest Action
- 2025-07-17: Referred to the House Committee on the Judiciary.
- Last Updated
- 2025-12-05T22:54:31Z
AI-Generated Summary
Purpose
The "Don't Sell My DNA Act" (H.R. 4492) aims to protect genetic information—defined under the Genetic Information Nondiscrimination Act of 2008 (GINA) as data about an individual's genes, genetic tests, or family medical history—from unauthorized use, sale, or disposal during bankruptcy proceedings. It ensures that such sensitive personal data is handled with strict privacy safeguards, preventing its exploitation in financial restructurings.
Key Provisions
- Inclusion in Definitions: Amends Section 101 of the Bankruptcy Code to classify genetic information as a type of "personally identifiable information," making it subject to enhanced protections.
- Restrictions on Sales or Leases: Under Section 363, courts cannot approve the sale, lease, or use of genetic information unless all affected individuals (including those not directly involved in the bankruptcy) provide explicit written consent after the bankruptcy case begins. This replaces a prior, less restrictive clause.
- Notice Requirements: Adds a new subsection (q) to Section 363, mandating that anyone whose genetic information is involved receives actual prior written notice before any use, sale, or lease occurs, ensuring the action is not final without this step.
- Deletion Mandate: Adds subsection (c) to Section 1107, requiring bankruptcy trustees or debtors in possession (the person or entity managing the bankrupt company's assets) 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 like hard drives.
- Effective Date and Applicability: The changes take effect immediately upon enactment and apply to all bankruptcy cases pending, commenced, or reopened on or after that date.
Significant Changes to Existing Law
- Expanded Privacy Scope: Previously, the Bankruptcy Code allowed sales of personal data if they did not violate non-bankruptcy laws, but it did not specifically address genetic information. This bill explicitly prohibits such transactions without consent and notice, integrating GINA's definition into bankruptcy rules for the first time.
- Consent and Deletion Requirements: Introduces affirmative written consent from all affected parties (beyond just creditors or parties to the case) and mandatory secure deletion, which were not required before. This shifts from a permissive framework to one that prioritizes individual privacy over asset liquidation efficiency.
- Broad Application: Unlike prior amendments that might apply only prospectively, this extends protections to ongoing cases, potentially requiring immediate compliance in active bankruptcies.
Potential Impacts
- On Government Agencies: Bankruptcy courts and the U.S. Trustee Program (which oversees trustees) will need to enforce new consent, notice, and deletion protocols, potentially increasing administrative workloads and requiring training on genetic data handling.
- On Citizens: Individuals whose genetic data is held by bankrupt entities (e.g., healthcare providers or biotech firms) gain stronger privacy rights, reducing risks of data misuse for discrimination or profit. However, it may complicate bankruptcy resolutions if consents are hard to obtain.
- On International Relations: Minimal direct impact, though it could influence how U.S. companies handle genetic data in cross-border bankruptcies involving foreign entities.
Main Stakeholders Affected
- Individuals: People whose genetic information is at risk, such as patients or research participants, who benefit from consent and deletion protections.
- Debtors and Trustees: Companies or individuals in bankruptcy, and the professionals managing their assets, who must now navigate stricter rules on data disposition.
- Creditors and Buyers: Parties interested in purchasing bankrupt assets, who may face delays or barriers if genetic data is involved without consents.
- Data-Holding Entities: Healthcare providers, genetic testing companies (e.g., 23andMe), and biotech firms filing for bankruptcy, required to comply with new safeguards.
- Courts and Regulators: Federal bankruptcy judges and agencies like NIST, tasked with overseeing implementation and approving deletion methods.
Notable Legal, Constitutional, or Political Implications
- Legal Implications: Strengthens integration of privacy laws like GINA into bankruptcy proceedings, potentially setting precedents for other sensitive data types (e.g., biometric info). It may lead to more litigation over consent validity or deletion compliance, but clarifies obligations to avoid ambiguity in asset sales.
- Constitutional Implications: Aligns with Fourth Amendment privacy expectations by limiting government-facilitated data sales in bankruptcy, without raising significant free speech or due process concerns. It reinforces non-discrimination principles from GINA.
- Political Implications: As a bipartisan bill (introduced by Rep. Cline and Rep. Lofgren), it highlights growing congressional focus on genetic privacy amid advances in biotechnology, potentially influencing future data protection legislation without partisan divides.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (3)
Rep. Lofgren, Zoe [D-CA-18], Rep. Harris, Mark [R-NC-8], Rep. Grothman, Glenn [R-WI-6]
Recent Actions
- 2025-07-17: Referred to the House Committee on the Judiciary.
- 2025-07-17: Introduced in House
- 2025-07-17: Introduced in House
Bill Versions
- Don’t Sell My DNA Act — issued 2025-07-17 — PDF (4 pages)