DNA testing agency 23andMe is bankrupt, and now the genomic knowledge of its 15 million customers is up on the market to the best bidder. Might that knowledge find yourself on the blockchain?
The corporate introduced 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 clients, lots of whom are actually scrambling to delete their knowledge from the service.
Privateness advocates and authorities officers alike have weighed in on the scenario, urging customers to obtain after which delete their knowledge ASAP. The sense of urgency elevated on March 26 when a choose gave 23andMe the official stamp of approval to promote person knowledge. However there may be nonetheless the query of the place these customers ought to transfer their knowledge and whether or not there may be in the end a greater different.
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 instantly 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 will not be with out its personal distinctive challenges.
23andMe’s difficult privateness historical past
23andMe could also be most identified for promoting DNA testing kits and providing ancestry and well being reviews, however its core enterprise mannequin is definitely centered round promoting its clients’ genetic knowledge to pharmaceutical firms and different researchers.
The corporate’s privateness coverage states that it’ll solely share a person’s DNA with a 3rd celebration if the person grants permission. Round 80% of its customers in the end choose 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 examine by knowledge removing service Incogni discovered that 23andMe’s privateness coverage was really one of many strongest amongst its rivals. Critically, nevertheless, the settlement additionally states that person knowledge will 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, informed Cointelegraph that clients give their genetic knowledge to firms like 23andMe below the idea that it will likely be protected below 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 best bidder,” he mentioned.
“But once more, we see a regulatory hole within the knowledge assortment trade, which, on this case, will possible go away 23andMe customers by no means figuring out what actually occurs with their bodily samples and delicate info.”
Privateness coverage issues apart, 23andMe has additionally confronted knowledge leaks. In 2023, hackers stole ancestry knowledge for about 6.9 million customers — roughly half of its total 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 a web-based discussion board claims to be promoting stolen 23andMe knowledge in October 2023. Supply: Resecurity
Safety specialists have warned that stolen genomic info might doubtlessly be used to hold out identification theft and even design focused bioweapons. Again in July 2022, US lawmakers and navy 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 overseas adversaries who wish to develop such bioweapons.
“There are actually weapons below improvement, and developed, which can be designed to focus on particular individuals,” mentioned Consultant Jason Crow, a Democrat from Colorado who sits on the Home Intelligence Committee. “That is what that is, the place you’ll be able to really take somebody’s DNA, , their medical profile, and you may goal a organic weapon that can kill that individual.”
Placing 23andMe on the blockchain
Placing DNA on the blockchain will not be a novel concept; Genecoin pitched it as early as 2014. However 23andMe’s chapter is making headlines, and a number of other blockchain initiatives are capitalizing on the momentum to make their respective pitches for why they provide a greater different than 23andMe.
Not less than 4 potential consumers have publicly declared their curiosity in 23andMe, and one among them is the Sei Basis — the group devoted to advancing the Sei blockchain. The precise mechanics of how the inspiration would carry 23andMe onto the blockchain usually are not solely clear, nevertheless it reiterated on March 31 that it will guarantee “one of many nation’s Most worthy property – the well being of its individuals, 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 information can be safer and tamper-resistant than some other type of centralized knowledge storage resolution.”
AR.IO has itself been pushing for 23andMe customers to obtain their knowledge and transfer it over to the ArDrive decentralized storage resolution, which has printed a step-by-step information explaining the way to add the info to an encrypted drive.
“That is one thing you are able to do proper now, and then you definitely gained’t must even fear about what is going to occur to your knowledge, since it is going to now not be within the 23andMe database,” mentioned Mataras.
Blockchain undertaking 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, informed Cointelegraph.
In accordance 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 choose into particular research on a case-by-case foundation, and so they receives a commission within the undertaking’s native token when their knowledge is used.
Associated: Cease giving your DNA knowledge away at no cost to 23andMe, says Genomes.io CEO
One other resolution, GenoBank, has another strategy: tokenizing genetic info onchain as “BioNFTs.” The corporate provides DNA testing kits linked to non-fungible tokens which can be self-custodied by the shopper, which means they’ll have their DNA sequenced anonymously.
“What if this second of disruption might really turn into a catalyst for constructive change?” requested its CEO, Daniel Uribe, in a March 24 weblog publish. 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 right now.”
Blockchain comes with its personal issues
Regardless of the present hype round bringing blockchain to DNA, there are nonetheless challenges in doing so, and decentralized options supply their very own set of potential dangers.
If a buyer misplaces the personal keys to their genomic knowledge, there may be solely a lot any undertaking 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 clients to safe their vaults if their personal keys are compromised, though they’re unable to truly unlock a person’s vault.
Then there are extra privateness issues on the laboratory degree. Even when the ultimate knowledge is saved in probably the most personal, safe method attainable, the sequencing laboratories themselves might not comply with the identical strict pointers.
By way of importing DNA knowledge on to the blockchain, there could possibly be an astronomical value related. A uncooked complete genome sequencing file a laboratory generates will be as much as 30 GB. This implies importing the uncooked information for 15 million clients — the full quantity of people that have given their DNA to 23andMe — to a decentralized storage resolution like Arweave would value upward of $492 million as of April 1.
450,000 TB of uncooked DNA knowledge would value almost half a billion {dollars} to add to Arweave. Supply: Arweave Charges
“Do not add it [DNA] to the blockchain. That’s the greatest mistake you would make,” argued de Pape. Along with the fee, he mentioned there are privateness issues.
Blockchain, most of the time, is a public area, proper? So, even for those who put it on the blockchain, it doesn’t suggest that it is solely personal to you. There’s a observe report of you importing the info there.
Lastly, laws add one other layer of complexity to the matter. A 2020 examine written partly by GenoBank’s Uribe discovered 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 attorneys, knowledge processors and enterprise enterprises engaged in blockchain choices, particularly as they pertain to high-risk knowledge units similar to genomic knowledge.”
So, whereas blockchain definitely provides a number of benefits over centralized firms like 23andMe, it’s no panacea, and it might not be for everybody.
However no matter the place customers select to maneuver their knowledge, the message from privateness advocates and safety specialists stays clear: Don’t go away it with 23andMe.
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