New Bipartisan Measures Aim to Safeguard Genetic Data
Republican Senators John Cornyn and Chuck Grassley, along with Democrat Senator Amy Klobuchar, are pushing for new bipartisan legislation to protect sensitive genetic information. Their initiative responds to increasing privacy concerns, particularly following the bankruptcy of 23andMe, as reported recently.
The senators have introduced the DONT SELL MY DNA Act, which aims to safeguard consumers’ genetic data when companies file for bankruptcy. This proposed bill seeks to update the Bankruptcy Act to include genetic information under the definition of “personally identifiable information.”
Currently, bankruptcy laws offer some protection for personally identifiable information during proceedings, which is intended to prevent identity theft and other illegal activities. According to Senate aides, the existing definition doesn’t encompass genetic information, leaving it vulnerable to misuse.
Aides noted that the current definition focuses on details like names, addresses, and social security numbers, but it’s rather outdated. They emphasized that the lack of inclusion of genetic data is a significant oversight in today’s context.
One Senate aide explained, “The new law will fix this by broadening the Bankruptcy Act’s definition of personal data.” The bill also mandates businesses to inform consumers about any use, sale, or lease of genetic information post-bankruptcy proceedings, with explicit agreements required before such actions can take place.
Moreover, it stipulates that genetic information owned by the trustee or debtor—which isn’t meant for sale or lease—must be eliminated from records. This is aimed to enhance protections and restore some control back to consumers over their private information.
Cornyn pointed out the need for companies to implement safeguards for this sensitive data, especially given the increasing accessibility of genetic insights to consumers. “By updating the Bankruptcy Act, we can effectively protect confidential information and prevent its misuse without consumers’ awareness,” he said.
Klobuchar expressed concerns over how companies, like 23andMe, appear to be profiting from American data while leaving consumers in the dark. “With the bill, we want to create new protections that enhance privacy and provide individuals with greater agency over how their sensitive health data is handled,” she remarked.
Grassley added that it’s crucial for consumers to feel assured that their personal information is safeguarded, noting, “Genetic information shouldn’t be mishandled in circumstances like bankruptcy.” He mentioned that the bill addresses existing gaps in legal protections for consumer genetic data.
Recently, 23andMe announced that Regeneron Pharmaceuticals will acquire the company through bankruptcy auctions. Both the company and consumers remain apprehensive about the protection of genetic data moving forward, even as Regeneron has promised to uphold privacy standards.
To provide context, 23andMe, which was once a leader in consumer DNA testing, filed for Chapter 11 bankruptcy in March due to financial difficulties and questions surrounding the security of genetic information. Regeneron is set to acquire nearly all of the company’s assets, with a transaction value of $256 million following a court-supervised auction.
The genetic testing firm estimated its assets and liabilities between $100 and $500 million. Regeneron’s acquisition will include both 23andMe’s personal genomic services as well as its health and research segments, raising more questions about the future of consumer privacy in the genetic testing space.
