H.R. 4492: Don’t Sell My DNA Act

This bill, titled the Don’t Sell My DNA Act, seeks to amend federal bankruptcy law to provide protections for genetic information. The primary focus is on ensuring that genetic information is not sold, leased, or otherwise used in bankruptcy proceedings without the explicit consent of the individuals involved. Below are the key provisions of the bill:

Amendments to Bankruptcy Law

The bill proposes several amendments to Title 11 of the United States Code, which governs bankruptcy:

• Definition of Genetic Information: The term genetic information is explicitly included in the definitions applicable to bankruptcy law. This aligns with the definition from the Genetic Information Nondiscrimination Act of 2008.
• Restrictions on Use, Sale, or Lease: Any attempt to use, sell, or lease genetic information in bankruptcy proceedings can only proceed if all affected individuals, including non-parties, have given their written consent after the case has started. This means that companies cannot just use genetic information freely without first notifying and obtaining agreement from individuals.
• Notification Requirement: Individuals whose genetic information is intended for use, sale, or lease must receive actual prior written notice. This is meant to ensure transparency and allow individuals to make informed choices regarding their genetic data.
• Deletion of Genetic Information: If a trustee in bankruptcy or a debtor in possession has genetic information as part of the bankruptcy estate but it is not related to any approved sale, lease, or other transaction, it must be deleted using approved methods. This is aimed at protecting the security and confidentiality of personal genetic information.

Implementation Timeline

The amendments introduced by this bill would take effect immediately upon enactment. They would apply to:

• All bankruptcy cases existing at the time this Act is enacted.
• All bankruptcy cases that are filed or reopened after the enactment date.

Conclusion

The overall intention of the Don’t Sell My DNA Act is to bolster the protection of personal genetic data during legal and financial proceedings, ensuring individuals have more control and awareness of how their genetic information can be utilized.

Relevant Companies

• HLT (Hilton Worldwide Holdings Inc.): If this bill affects the sale of genetic information related to health data for bioinformatics, their health-oriented initiatives could be impacted.
• ADS (Allied Universal): If involved in managing large stores of personal data that include genetic information, their operations may need to adapt to comply with the new requirements.