Bankrupt DNA testing firm plans to auction off trove of genetic information from 15 million people.
Last week, one of the world’s most prominent consumer genetics companies, 23andMe, filed for bankruptcy.
As part of the federal process to address its financial troubles, the beleaguered biotech firm is exploring the sale of its assets.
That would have been all well, except that among those assets is one of the largest privately held genomic databases ever assembled.
Now, the DNA data of more than 15 million people is set to go up for auction. The auction is scheduled to take place as soon as May 14.
While some see it as a potential windfall for biomedical research, others warn of serious risks to consumer rights and personal privacy.
A treasure trove for research
“If a future buyer is not interested in research collaborations, it would be a great shame if the potential this data holds for human health advances were not realized,” said Rachel Freathy, a geneticist at the University of Exeter. Her collaboration with 23andMe was abruptly halted by the company’s financial collapse, according to a report by Futurism.
Freathy’s view is echoed by many in the scientific community, who see the data as a goldmine for understanding complex diseases and improving healthcare. The sheer volume of data collected from consumers worldwide could help identify new genetic markers and refine personalized medicine strategies.
But others are sounding the alarm.
A ticking privacy bomb?
Amy McGuire, a bioethicist at Baylor College of Medicine, noted that while there is no immediate reason for panic, the risks cannot be ignored. 23andMe could, for instance, modify its privacy policy in the future, potentially allowing access by insurers or law enforcement.
Insurers could potentially use genetic information to assess a person’s risk of developing certain illnesses or conditions. This could inform decisions on premium rates and coverage eligibility
Large companies or data brokers may use genetic information to develop hyper-targeted health or wellness products or sell datasets to pharmaceutical companies for drug development purposes.
Genetic data can’t be changed like a password. Once genetic data is sold, repurposed, or leaked, the implications could extend well beyond the original customers — affecting family members, communities, and future generations.
There are also growing concerns about algorithmic bias, where flawed or incomplete understanding of genetic markers could lead to harmful stereotyping or inequitable treatment.
The US Federal Trade Commission (FTC) warned genetic testing firm 23andMe on Monday (March 31) to honor its promise to protect people’s personal information as it navigates bankruptcy.
“Any bankruptcy-related sale or transfer involving 23andMe users’ personal information and biological samples will be subject to the representations the company has made to users about both privacy and data security,” FTC Chairman Andrew Ferguson said in a letter to the company’s bankruptcy trustees.
The FTC has powers to protect consumers from unfair, deceptive, or fraudulent business practices and investigate suspected violations.
