Blockchain projects fight for 23andMe user data amid bankruptcy

DNA investigating steadfast 23andMe is bankrupt, and present the genomic information of its 15 cardinal users is up for merchantability to the highest bidder. Could that information extremity up connected the blockchain?

The institution announced connected March 23 that it had filed for Chapter 11 bankruptcy extortion and that its CEO, Anne Wojcicki, had stepped down. The announcement sent waves of interest among 23andMe’s customers, galore of whom are present scrambling to delete their information from the service.

Privacy advocates and authorities officials alike person weighed successful connected the situation, urging users to download and past delete their information ASAP. The consciousness of urgency accrued connected March 26 erstwhile a judge gave 23andMe the authoritative stamp of support to merchantability idiosyncratic data. But determination is inactive the question of wherever these users should determination their information and whether determination is yet a amended alternative.

In the aftermath of the bankruptcy, blockchain advocates person seized the accidental to marque the lawsuit that DNA is amended disconnected connected the blockchain — whether straight stored connected the servers of a decentralized web oregon utilizing immoderate elements of Web3 exertion connected the backmost end. 

The committedness of a much backstage 23andMe, wherever users power their ain data, is alluring to galore — yet really bringing the satellite of DNA sequencing onto the blockchain is not without its ain unsocial challenges.

23andMe’s analyzable privateness history

23andMe whitethorn beryllium astir known for selling DNA investigating kits and offering ancestry and wellness reports, but its halfway concern exemplary is really centered astir selling its customers' familial information to pharmaceutical companies and different researchers.

The company’s privateness argumentation states that it volition lone stock a user’s DNA with a 3rd enactment if the idiosyncratic grants permission. Around 80% of its users yet opt into this agreement. 23andMe besides claims that immoderate idiosyncratic accusation is anonymized earlier being shared, though it’s not inconceivable that someone’s unsocial familial information could inactive beryllium linked backmost to them.

A December 2024 study by information removal work Incogni recovered that 23andMe’s privateness argumentation was really 1 of the strongest among its competitors. Critically, however, the statement besides states that idiosyncratic information tin beryllium sold oregon transferred if the institution is acquired — and the caller proprietor whitethorn not person the aforesaid privateness policy.

How DNA investigating services usage familial information. Source: Incogni

Darius Belejevas, caput of Incogni, told Cointelegraph that customers springiness their familial information to companies similar 23andMe nether the presumption that it volition beryllium protected nether the privateness presumption they agreed to. “A bankruptcy merchantability fundamentally alters the presumption of that agreement, perchance exposing their astir delicate biologic accusation to usage by the highest bidder,” helium said.

“Yet again, we spot a regulatory spread successful the information postulation industry, which, successful this case, volition apt permission 23andMe users ne'er knowing what truly happens with their carnal samples and delicate information.”

Privacy argumentation concerns aside, 23andMe has besides faced information leaks. In 2023, hackers stole ancestry information for astir 6.9 cardinal users — astir fractional of its full lawsuit basal astatine the time. What was peculiarly concerning was that the hack whitethorn person specifically targeted users of Ashkenazi Jewish and Chinese descent.

A idiosyncratic of an online forum claims to beryllium selling stolen 23andMe information successful October 2023. Source: Resecurity

Security experts person warned that stolen genomic accusation could perchance beryllium utilized to transportation retired identity theft oregon adjacent plan targeted bioweapons. Back successful July 2022, US lawmakers and subject officials issued a warning astatine the Aspen Security Forum that the information held by DNA investigating services — specifically calling retired 23andMe — were imaginable targets for overseas adversaries who privation to make specified bioweapons.

“There are present weapons nether development, and developed, that are designed to people circumstantial people,” said Representative Jason Crow, a Democrat from Colorado who sits connected the House Intelligence Committee. “That's what this is, wherever you tin really instrumentality someone's DNA, you know, their aesculapian profile, and you tin people a biologic limb that volition termination that person.”

Putting 23andMe connected the blockchain

Putting DNA connected the blockchain is not a caller idea; Genecoin pitched it arsenic aboriginal arsenic 2014. But 23andMe’s bankruptcy is making headlines, and respective blockchain projects are capitalizing connected the momentum to marque their respective pitches for wherefore they connection a amended alternate than 23andMe.

At slightest 4 imaginable buyers person publically declared their involvement successful 23andMe, and 1 of them is the Sei Foundation — the enactment dedicated to advancing the Sei blockchain. The nonstop mechanics of however the instauration would bring 23andMe onto the blockchain are not wholly clear, but it reiterated connected March 31 that it would guarantee “one of the nation’s astir invaluable assets - the wellness of its people, survives connected chain.”

Source: Sei

Phil Mataras, laminitis of the decentralized unreality web AR.IO — which is built atop Arweave — said that the determination was a “flashy, but breathtaking prospect” successful comments shared with Cointelegraph. “The information would beryllium much unafraid and tamper-resistant than immoderate different benignant of centralized information retention solution.”

AR.IO has itself been pushing for 23andMe users to download their information and determination it implicit to the ArDrive decentralized retention solution, which has published a step-by-step usher explaining however to upload the information to an encrypted drive. 

“This is thing you tin bash close now, and past you won’t person to adjacent interest astir what volition hap to your data, since it volition nary longer beryllium successful the 23andMe database,” said Mataras.

Blockchain task Genomes.io, which describes itself arsenic “the world’s largest user-owned genomics database,” has seen caller users flocking to the level since 23andMe’s bankruptcy. “Hundreds of caller users per week are joining us,” its CEO, Aldo de Pape, told Cointelegraph.

According to de Pape, “This is simply a wide usage lawsuit for decentralized exertion to amended a process that has been flawed from the beginning, and which is this essence of bringing information sovereignty backmost to individuals, giving the wellness accusation backmost to an individual, making definite that the proprietor and the wellness information are one.”

Genomes.io uploads users’ genomic information into what it calls “vaults,” which are end-to-end encrypted truthful that lone the idiosyncratic holds the backstage keys needed to entree the data. This besides means that users' DNA volition inactive beryllium secured if the institution is ever hacked oregon sold.

Users tin past opt into circumstantial studies connected a case-by-case basis, and they get paid successful the project’s autochthonal token erstwhile their information is used. 

Related: Stop giving your DNA information distant for escaped to 23andMe, says Genomes.io CEO

Another solution, GenoBank, has an alternate approach: tokenizing familial accusation onchain arsenic “BioNFTs.” The institution offers DNA investigating kits linked to non-fungible tokens that are self-custodied by the customer, meaning they tin person their DNA sequenced anonymously.

“What if this infinitesimal of disruption could really go a catalyst for affirmative change?” asked its CEO, Daniel Uribe, successful a March 24 blog post. Much similar Genomes.io, Uribe laid retired a imaginativeness wherever everyone owns their data, controls who accesses it, captures its worth and maintains privacy. 

“This isn’t subject fiction. The exertion exists today.”

Blockchain comes with its ain concerns

Despite the existent hype astir bringing blockchain to DNA, determination are inactive challenges successful doing so, and decentralized solutions connection their ain acceptable of imaginable risks.

If a lawsuit misplaces the backstage keys to their genomic data, determination is lone truthful overmuch immoderate task oregon institution tin bash to assistance them. Perhaps much terrifying is the thought of a idiosyncratic having their backstage keys hacked and their genomic information stolen.

De Pape said that Genomes.io, for its part, volition enactment with customers to unafraid their vaults if their backstage keys are compromised, though they are incapable to really unlock a user’s vault.

Then determination are further privateness concerns astatine the laboratory level. Even if the last information is stored successful the astir private, unafraid mode possible, the sequencing laboratories themselves whitethorn not travel the aforesaid strict guidelines.

In presumption of uploading DNA information straight to the blockchain, determination could beryllium an astronomical outgo associated. A earthy full genome sequencing record a laboratory generates tin beryllium up to 30 GB. This means uploading the earthy files for 15 cardinal customers — the full fig of radical who person fixed their DNA to 23andMe — to a decentralized retention solution similar Arweave would outgo upward of $492 cardinal arsenic of April 1. 

450,000 TB of earthy DNA information would outgo astir fractional a cardinal dollars to upload to Arweave. Source: Arweave Fees

“Don't upload it [DNA] to the blockchain. That is the biggest mistake you could make,” argued de Pape. In summation to the cost, helium said determination are privateness concerns.

Blockchain, much often than not, is simply a nationalist space, right? So, adjacent if you enactment it connected the blockchain, it doesn't mean that it's wholly backstage to you. There is simply a way grounds of you uploading the information there.

Finally, regulations adhd different furniture of complexity to the matter. A 2020 survey written successful portion by GenoBank’s Uribe found that regulatory frameworks similar the EU’s General Data Protection Regulation, which sets strict guidelines for the handling of idiosyncratic data, person “generated immoderate challenges for lawyers, information processors and concern enterprises engaged successful blockchain offerings, particularly arsenic they pertain to high-risk information sets specified arsenic genomic data.”

So, portion blockchain surely offers respective advantages implicit centralized companies similar 23andMe, it’s nary panacea, and it whitethorn not beryllium for everyone.

But careless of wherever users take to determination their data, the connection from privateness advocates and information experts remains clear: Don’t permission it with 23andMe.

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