23andMe eyeing auction of one of world’s largest genomic database: Is your info up for sale?

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 company, 23andMe, filed for bankruptcy.

As part of the federal process to address its money troubles, the beleaguered biotech firm is looking to sell off its assets.

That would have been all well, except…among those assets is one of the largest privately held genomic databases ever assembled.

So, now, the DNA data of more than 15 million people is set to go on the auction block. The auction could 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 that the potential this data holds for human health advances would not be 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 across the globe, could help identify new genetic markers and refine personalised 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, alter its privacy policy in the future, potentially opening the door for 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 might use genetic information to develop hyper-targeted health or wellness products or sell datasets to pharmaceutical companies for drug development.

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) on Monday (March 31) warned genetic testing firm 23andMe 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.

With inputs from agencies