Representatives Zoe Lofgren (D-CA) and Ben Cline (R-VA) introduced the bipartisan Don’t Sell My DNA Act (H.R. 4492), aimed at protecting consumers’ genetic data during bankruptcy proceedings. This legislation addresses growing concerns over the potential sale of sensitive genetic information by companies like direct-to-consumer genetic testing firms, such as 23andMe, which have faced financial difficulties. The act seeks to amend the U.S. Bankruptcy Code to ensure genetic data is not treated as a mere corporate asset to be sold without consent.
As we’ve seen with the misuse of data being transferred our DNA and genetic data is no different. If Lofgren and Cline get their way this will be a big win for data subjects and another set of compliance measures DNA software and startup companies will have to deal with. Luckily companies like Captain Compliance can help.
Reps. Lofgren and Cline Introduce Bipartisan Don’t Sell My DNA Act
The Don’t Sell My DNA Act is designed to safeguard genetic information by incorporating it into the protections afforded to personally identifiable information under Title 11 of the United States Code. It recognizes the unique sensitivity of genetic data, which can reveal intimate details about an individual’s health, ancestry, and family relationships. The bill applies to any bankruptcy case pending or commenced after its enactment, emphasizing proactive privacy measures in an era where at-home DNA testing has become increasingly popular. If you followed our piece about GIPA and genetic data acts you’ll see some commonalities and why this is such an important topic.
What the Act Proposes
The legislation proposes several key amendments to the Bankruptcy Code:
- Definition of Genetic Information: Genetic information is defined as per Section 201 of the Genetic Information Nondiscrimination Act of 2008 (GINA), and is added to the list of personally identifiable information under Section 101(41A) of the Bankruptcy Code.
- Prohibitions on Sale or Lease: The act prohibits the use, sale, or lease of genetic information during bankruptcy unless all affected individuals provide affirmative written consent after the bankruptcy case has begun. This ensures that no transaction involving genetic data can proceed without explicit approval.
- Notice Requirements: Any proposed use, sale, or lease of genetic information must include actual prior written notice to each person whose data would be affected, making the process transparent and allowing individuals to make informed decisions.
- Deletion Mandates: For any genetic information that is part of the bankruptcy estate but not subject to an approved sale, lease, or other disposition, the trustee or debtor in possession must permanently delete it. Deletion must follow court-prescribed methods, such as the Guidelines for Media Sanitization issued by the National Institute of Standards and Technology (NIST Special Publication 800-88) or its successors.
While the bill does not introduce new specific penalties, violations would be enforceable under existing bankruptcy laws, potentially leading to court sanctions, contempt charges, or other remedies for non-compliance.
Background and Motivation
The introduction of this act comes amid concerns raised by the financial struggles of companies like 23andMe, a prominent direct-to-consumer genetic testing service. Reports of potential data sales in bankruptcy proceedings have sparked outrage, highlighting a loophole in current laws that could allow sensitive genetic data to be auctioned off without consumer knowledge or consent. The legislation aims to close this gap, ensuring that bankruptcy does not result in the unauthorized commodification of personal genetic information.
Sponsors of the Bill
Representative Ben Cline emphasized the personal nature of genetic data, stating: “Bankruptcy should not lead to a fire sale of Americans’ most personal information. Your DNA is not just another line item that can just be sold without the knowledge of the consumer. It is private, sensitive data that belongs to you. This bill helps ensure that genetic information is not sold off to the highest bidder when a company files for bankruptcy.”
Representative Zoe Lofgren highlighted the unexpected risks for consumers, noting: “People looking for long-lost relatives likely didn’t expect that their genetic data could be sold to the highest bidder. There is rightful outrage about the 23andMe plans, and Congress must step in to safeguard Americans’ privacy. Our bipartisan Don’t Sell My DNA Act should race through both chambers and become law because it’s a straightforward way to protect our most sensitive data.”
Support and Companion Legislation
The Don’t Sell My DNA Act has garnered bipartisan support and serves as the House companion to S.1916, a similar bill introduced in the Senate by Senators John Cornyn (R-TX), Amy Klobuchar (D-MN), and Judiciary Committee Chairman Chuck Grassley (R-IA). This cross-chamber effort underscores the widespread recognition of the need to protect genetic privacy in the face of evolving technological and financial landscapes.
The Don’t Sell My DNA Act represents a targeted, commonsense approach to enhancing consumer protections. By requiring consent, notice, and deletion where appropriate (Our DSR Portal can handle this and even automate it!), it aims to prevent the misuse of genetic data and restore trust in how personal information is handled during corporate bankruptcies. As the bill progresses through Congress, it could set a precedent for stronger data privacy measures nationwide.
