A DNA testing company has declared bankruptcy, putting the genomic data of its 15 million users on the auction block for potential buyers. Is there a chance this data could end up being stored on the blockchain?
On March 23, the firm revealed it had sought Chapter 11 bankruptcy protection, leading to the resignation of its CEO. This announcement raised significant alarm among the company’s clients, many of whom are now hurrying to remove their information from the platform.
Privacy advocates and governmental representatives have stepped in, imploring users to download and subsequently delete their data. The urgency heightened on March 26 when a judge officially permitted the company to sell user information. However, concerns remain about where users should transfer their data and whether superior options exist.
In the aftermath of the bankruptcy, proponents of blockchain have eagerly argued that genomic data is better suited for blockchain storage, whether through direct storage on a decentralized network or utilizing Web3 technologies on the backend.
The idea of a more privacy-focused DNA testing service where users have complete control over their data is enticing to many, but transitioning DNA sequencing to the blockchain poses its own set of difficulties.
The Complex Privacy Background of the Company
While the company is widely recognized for its DNA testing kits and ancestry reports, its primary business model revolves around selling users’ genetic data to pharmaceutical firms and researchers.
According to its privacy policy, the company will only share a user’s DNA with third parties if that user explicitly consents. Approximately 80% of clients eventually opt into this arrangement. The company also asserts that any shared user data is anonymized beforehand; however, there remains the possibility of unique genetic details being traced back to individuals.
A December 2024 study by a data removal service indicated that the company’s privacy policy was among the strongest in its field. Yet, the policy allows for user data to be sold or transferred if the firm is acquired, raising concerns that a new owner may not uphold the same privacy standards.
The utilization of genetic information by DNA testing services.
Darius Belejevas, head of the data removal service, expressed to an outlet that customers provide their genetic data under the belief that it will be safeguarded by agreed privacy terms. He noted, “A bankruptcy sale significantly changes the terms of that agreement, possibly putting their most sensitive biological information at risk of exploitation by the highest bidder.”
He further emphasized the regulatory void in the data collection sector, suggesting that 23andMe users may never truly understand the fate of their biological samples and sensitive data.
Beyond privacy concerns, the company has also experienced data breaches. In 2023, hackers compromised the ancestry data of approximately 6.9 million users, which was about half of its customer base at the time. Particularly alarming was the targeting of individuals of Ashkenazi Jewish and Chinese descent.
Claims of selling stolen user data surfaced in an online forum.
Security experts have highlighted the risks that stolen genetic information poses for identity theft and even the development of targeted bioweapons. In July 2022, U.S. lawmakers and military officials issued warnings about DNA testing services being prime targets for adversaries seeking to create such bioweapons.
“There are currently weapons being developed that can target specific individuals,” remarked a representative from Colorado who is part of the House Intelligence Committee. “That’s the crux of the matter, as one can take someone’s DNA and medical profile to create a biological weapon aimed at them.”
Exploring Blockchain as a Solution
The idea of storing DNA on the blockchain isn’t particularly new, as concepts like these were suggested as far back as 2014. However, with the bankruptcy news, several blockchain initiatives are eager to present their offerings as improved options.
Public interest in the company has surged, with at least four potential buyers expressing interest—one being an organization dedicated to furthering a specific blockchain. The exact method by which they intend to transition the company’s data to the blockchain remains unclear, though they have assured that the wellbeing of the population will remain a priority.
Food for thought on the value of public health data.
The founder of a decentralized cloud network emphasized the exciting yet flashy prospect of transitioning such data to a more secure and tamper-resistant database compared to traditional storage options.
Simultaneously, this decentralized cloud network has been urging users to back up their data and migrate it to a different storage solution, providing straightforward guidance on how to securely upload their information.
“This is achievable now, ensuring you don’t have to worry about the future of your data, as it won’t remain in the company’s database,” stated the founder.
Another blockchain initiative, describing itself as the largest user-owned genomics database, has seen a significant influx of new users since the bankruptcy announcement. Its CEO remarked that this situation exemplifies the effectiveness of decentralized technology in rectifying established flaws, focusing on returning data control to individuals.
This platform encrypts users’ genomic data, ensuring that only they hold the keys to access it. This means their genetic information is protected, even in the event of a company breach or sale.
Another innovative approach involves turning genetic information into on-chain tokenized assets. This allows for anonymous DNA sequencing linked to self-custodied NFTs.
“What if this disruption ultimately leads to meaningful change?” pondered the CEO of this initiative, envisioning a future where individuals fully own their data, control access to it, and maintain their privacy. “The technology necessary for this vision exists today.”
Challenges of Blockchain Integration
Despite the rising enthusiasm for integrating blockchain with DNA, there are numerous challenges and unique risks associated with decentralized solutions.
If a user loses access to the keys for their genomic data, recovery options are limited, which can be extremely troubling if their keys are stolen, leading to potential identity theft.
Even with robust privacy measures, additional issues exist at the laboratory level, where strict protocols may not be enforced consistently.
Moreover, the financial implications of uploading raw genomic data to the blockchain are monumental. A single genome file can be massive, which means relocating data for millions of users could run into exorbitant costs.
Potential costs associated with uploading genomic data to a decentralized platform.
One expert cautioned against uploading genetic data to blockchain platforms altogether, pointing out not only the cost but also the possible privacy implications.
“Blockchain is often a public domain, so storing your DNA there may not guarantee complete confidentiality,” he warned, outlining the risks associated with public records of data uploads.
Additionally, regulatory frameworks add another layer of complexity, as guidelines like the EU’s data protection regulations present challenges for those involved in blockchain projects related to sensitive data sets such as genetic material.
While blockchain presents potential benefits compared to traditional companies, it’s not a cure-all and might not be suitable for everyone.
The overarching message from privacy advocates and security experts is consistent: do not keep your data with the bankrupt company.