DNA testing agency 23andMe is bankrupt, and now the genomic knowledge of its 15 million customers is up on the market to the very best bidder. Might that knowledge find yourself on the blockchain?
The corporate announced on March 23 that it had filed for Chapter 11 chapter safety and that its CEO, Anne Wojcicki, had stepped down. The announcement despatched waves of concern amongst 23andMe’s prospects, lots of whom at the moment are scrambling to delete their knowledge from the service.
Privateness advocates and authorities officers alike have weighed in on the state of affairs, urging customers to obtain after which delete their knowledge ASAP. The sense of urgency elevated on March 26 when a judge gave 23andMe the official stamp of approval to promote person knowledge. However there's nonetheless the query of the place these customers ought to transfer their knowledge and whether or not there's in the end a greater various.
Within the wake of the chapter, blockchain advocates have seized the chance to make the case that DNA is healthier off on the blockchain — whether or not immediately saved on the servers of a decentralized community or utilizing some parts of Web3 expertise on the again finish.
The promise of a extra personal 23andMe, the place customers management their very own knowledge, is alluring to many — but really bringing the world of DNA sequencing onto the blockchain is just not with out its personal distinctive challenges.
23andMe’s difficult privateness historical past
23andMe could also be most recognized for promoting DNA testing kits and providing ancestry and well being studies, however its core enterprise mannequin is definitely centered round promoting its prospects' genetic knowledge to pharmaceutical corporations and different researchers.
The corporate’s privateness coverage states that it's going to solely share a person’s DNA with a 3rd social gathering if the person grants permission. Round 80% of its customers in the end opt into this settlement. 23andMe additionally claims that any person info is anonymized earlier than being shared, although it’s not inconceivable that somebody’s distinctive genetic knowledge might nonetheless be linked again to them.
A December 2024 study by knowledge elimination service Incogni discovered that 23andMe’s privateness coverage was really one of many strongest amongst its opponents. Critically, nonetheless, the settlement additionally states that person knowledge might be offered or transferred if the corporate is acquired — and the brand new proprietor might not have the identical privateness coverage.
How DNA testing companies use genetic info. Supply: Incogni
Darius Belejevas, head of Incogni, advised Cointelegraph that prospects give their genetic knowledge to corporations like 23andMe underneath the idea that it will likely be protected underneath the privateness phrases they agreed to. “A chapter sale essentially alters the phrases of that settlement, doubtlessly exposing their most delicate organic info to make use of by the very best bidder,” he mentioned.
“But once more, we see a regulatory hole within the knowledge assortment trade, which, on this case, will possible depart 23andMe customers by no means figuring out what actually occurs with their bodily samples and delicate info.”
Privateness coverage considerations apart, 23andMe has additionally confronted knowledge leaks. In 2023, hackers stole ancestry knowledge for about 6.9 million customers — roughly half of its whole buyer base on the time. What was notably regarding was that the hack might have particularly focused customers of Ashkenazi Jewish and Chinese language descent.
A person of an internet discussion board claims to be promoting stolen 23andMe knowledge in October 2023. Supply: Resecurity
Safety consultants have warned that stolen genomic info might doubtlessly be used to hold out identity theft and even design focused bioweapons. Again in July 2022, US lawmakers and army officers issued a warning on the Aspen Safety Discussion board that the info held by DNA testing companies — particularly calling out 23andMe — have been potential targets for international adversaries who need to develop such bioweapons.
“There at the moment are weapons underneath growth, and developed, which might be designed to focus on particular folks,” mentioned Consultant Jason Crow, a Democrat from Colorado who sits on the Home Intelligence Committee. “That is what that is, the place you possibly can really take somebody's DNA, you recognize, their medical profile, and you may goal a organic weapon that may kill that particular person.”
Placing 23andMe on the blockchain
Placing DNA on the blockchain is just not a novel concept; Genecoin pitched it as early as 2014. However 23andMe’s chapter is making headlines, and several other blockchain tasks are capitalizing on the momentum to make their respective pitches for why they provide a greater various than 23andMe.
Not less than 4 potential consumers have publicly declared their curiosity in 23andMe, and one in all them is the Sei Foundation — the group devoted to advancing the Sei blockchain. The precise mechanics of how the muse would carry 23andMe onto the blockchain will not be totally clear, however it reiterated on March 31 that it will guarantee “one of many nation’s most dear property - the well being of its folks, survives on chain.”
Supply: Sei
Phil Mataras, founding father of the decentralized cloud community AR.IO — which is constructed atop Arweave — mentioned that the transfer was a “flashy, however thrilling prospect” in feedback shared with Cointelegraph. “The info could be safer and tamper-resistant than another sort of centralized knowledge storage answer.”
AR.IO has itself been pushing for 23andMe customers to obtain their knowledge and transfer it over to the ArDrive decentralized storage answer, which has published a step-by-step information explaining easy methods to add the info to an encrypted drive.
“That is one thing you are able to do proper now, and you then gained’t need to even fear about what is going to occur to your knowledge, since it is going to not be within the 23andMe database,” mentioned Mataras.
Blockchain challenge Genomes.io, which describes itself as “the world’s largest user-owned genomics database,” has seen new customers flocking to the platform since 23andMe’s chapter. “Tons of of latest customers per week are becoming a member of us,” its CEO, Aldo de Pape, advised Cointelegraph.
In line with de Pape, “It is a clear use case for decentralized expertise to enhance a course of that has been flawed from the start, and which is that this essence of bringing knowledge sovereignty again to people, giving the well being info again to a person, ensuring that the proprietor and the well being knowledge are one.”
Genomes.io uploads customers’ genomic knowledge into what it calls “vaults,” that are end-to-end encrypted in order that solely the person holds the personal keys wanted to entry the info. This additionally signifies that customers' DNA will nonetheless be secured if the corporate is ever hacked or offered.
Customers can then decide into particular research on a case-by-case foundation, and so they receives a commission within the challenge’s native token when their knowledge is used.
Associated: Stop giving your DNA data away for free to 23andMe, says Genomes.io CEO
One other answer, GenoBank, has another method: tokenizing genetic info onchain as “BioNFTs.” The corporate affords DNA testing kits linked to non-fungible tokens which might be self-custodied by the client, which means they'll have their DNA sequenced anonymously.
“What if this second of disruption might really turn out to be a catalyst for optimistic change?” asked its CEO, Daniel Uribe, in a March 24 weblog submit. Very similar to Genomes.io, Uribe laid out a imaginative and prescient the place everybody owns their knowledge, controls who accesses it, captures its worth and maintains privateness.
“This isn’t science fiction. The expertise exists as we speak.”
Blockchain comes with its personal considerations
Regardless of the present hype round bringing blockchain to DNA, there are nonetheless challenges in doing so, and decentralized options provide their very own set of potential dangers.
If a buyer misplaces the personal keys to their genomic knowledge, there's solely a lot any challenge or firm can do to assist them. Maybe extra terrifying is the concept of a person having their personal keys hacked and their genomic knowledge stolen.
De Pape mentioned that Genomes.io, for its half, will work with prospects to safe their vaults if their personal keys are compromised, though they're unable to really unlock a person’s vault.
Then there are further privateness considerations on the laboratory degree. Even when the ultimate knowledge is saved in essentially the most personal, safe method attainable, the sequencing laboratories themselves might not observe the identical strict pointers.
By way of importing DNA knowledge on to the blockchain, there might be an astronomical price related. A uncooked complete genome sequencing file a laboratory generates might be up to 30 GB. This implies importing the uncooked recordsdata for 15 million prospects — the overall quantity of people that have given their DNA to 23andMe — to a decentralized storage answer like Arweave would price upward of $492 million as of April 1.
450,000 TB of uncooked DNA knowledge would price almost half a billion {dollars} to add to Arweave. Supply: Arweave Fees
“Do not add it [DNA] to the blockchain. That's the largest mistake you possibly can make,” argued de Pape. Along with the associated fee, he mentioned there are privateness considerations.
Blockchain, as a rule, is a public area, proper? So, even if you happen to put it on the blockchain, it does not imply that it is totally personal to you. There's a observe file of you importing the info there.
Lastly, rules add one other layer of complexity to the matter. A 2020 examine written partially by GenoBank’s Uribe found that regulatory frameworks just like the EU’s Common Knowledge Safety Regulation, which units strict pointers for the dealing with of person knowledge, have “generated some challenges for legal professionals, knowledge processors and enterprise enterprises engaged in blockchain choices, particularly as they pertain to high-risk knowledge units reminiscent of genomic knowledge.”
So, whereas blockchain definitely affords a number of benefits over centralized corporations like 23andMe, it’s no panacea, and it is probably not for everybody.
However no matter the place customers select to maneuver their knowledge, the message from privateness advocates and safety consultants stays clear: Don’t depart it with 23andMe.
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