Don’t Sell My DNA Act
The Don’t Sell My DNA Act (H.R. 4492) would amend title 11 of the U.S. Code (bankruptcy law) to add genetic information to the category of protected information inside bankruptcy estates. The bill uses the Genetic Information Nondiscrimination Act (GINA) definition of genetic information. It would restrict how genetic data in a bankruptcy estate can be used, sold, or leased, require affirmative written consent from all affected individuals (including non-parties) before any such use or sale, require advance notice to those whose genetic information would be affected, and require deletion of any genetic data from the estate that is not subject to disposition, using court-approved deletion methods. The changes would take effect upon enactment and apply to cases pending, commenced, or reopened after enactment. In short, the bill strengthens privacy protections around genetic information in bankruptcy proceedings, making it harder to monetize or disclose DNA data and mandating recovery or deletion of genetic data that isn’t disposed of through a sale or lease.
Key Points
- 1Adds genetic information to the list of protected property in bankruptcy by amending §101(41A)(A), defining it per GINA (42 U.S.C. 2000ff).
- 2Limits use, sale, or lease of personally identifiable genetic information in a bankruptcy proceeding: such actions require affirmative written consent from all affected persons after the case starts; sale is not allowed if it would violate applicable nonbankruptcy law.
- 3Establishes a new notice requirement in §363: any use, sale, or lease of genetic information must be preceded by actual written notice to every person whose genetic information would be affected.
- 4Adds a deletion obligation in §1107(c): a trustee or debtor in possession must delete genetic information from the estate that was not disposed of, using court-approved methods (potentially including NIST’s sanitization guidelines, SP 800-88).
- 5Effective date and scope: applies on enactment and to cases pending as of enactment or commenced/reopened after enactment.