You Can Soon Get Your DNA Sequenced Anonymously
When biomedical researchers go to sleep at night they dream of genomes. Yours, and mine, and all six degrees of Kevin Bacon between us. And who can blame them? Think of all the information packed into the six billion letters of genetic code that makes you uniquely you and most definitely not me. Blockbuster drugs and other disease-smashing discoveries could be hiding in that DNA, if only scientists could collect enough of it.
So far, about 26 million people worldwide have had at least part of their genome decoded—mostly by companies like 23andMe and Ancestry. But only a tiny fraction of them have gone all the way. In 2009, a full genome would run you $100,000. Today, it’s more like $1,000. One company thinks it can crack $100 by 2021. So where are all the genomes? At least one startup is arguing that would-be sequencers have been scared off by a once-distant specter: personal data privacy.
According to Kevin Quinn, the chief technology officer at Nebula Genomics, the great privacy awakening started shortly after the Facebook/Cambridge Analytica scandal broke in 2018. “People started seeing services they use every day not working the way they were intended,” he says. “And it’s had a strong whiplash in the genomics space.” 23andMe’s CEO Anne Wojcicki has also suggested privacy concerns as the reason for slumping sales of DNA tests. Nebula is one of several startups trying to solve those issues by putting people’s DNA on a blockchain.
The startup was cofounded by Harvard genomics pioneer George Church, who last month apologized for his associations with Jeffrey Epstein. When it launched early last year, it offered low-quality genome sequences for $99 with data access controls written into a public ledger. This summer they added a “sponsored sequencing” model, which offers customers a free clinical-grade genome, if they let Nebula share their de-identified DNA and other data with pharmaceutical partners. And on Thursday, the company introduced the field’s first “anonymous sequencing,” a process that aims to entirely remove the person from their most personal information.
When you order a spit kit from a company like 23andMe or Ancestry, you have to pay with a credit card and enter an address. And you need an email to set up an account to see your results. All of this you’re doing on an internet browser. And all that data gets attached to the DNA swirling inside your tube of spit, soon to become a data file filled with short strings of As, Cs, Ts, and Gs. Before companies can share that genetic data with researchers or pharma companies eager to mine it, they have to strip away all those personal identifiers (and then some).
Nebula already does this. But, Quinn says, customers have to trust that everything gets properly scrubbed and no one ever messes up. The idea of anonymous sequencing is to decouple genomic data from personal information from the get-go. Before it even gets to Nebula.
That’s why the first step to anonymous sequencing is to clean up your e-commerce habits more generally. Nebula suggests getting encrypted email, a service provided by companies like Enigmail, Mailvelope, and Protonmail, and using a VPN to mask your browsing behavior. And you’ll definitely need an address not associated with your name. For that a PO Box will work. A secure crypto wallet or pre-loaded credit card is also a must. Once you’ve done all that, you’re ready to anonymously pay for and receive a Nebula spit kit. The company sequences your genome and throws it on their secure cloud without ever knowing who it belongs to.
