Those of us who signed up for DNA testing kits from 23andMe did so thinking we’d unlock deep ancestral secrets. Maybe we’d discover we had royal blood, or finally settle the family debate over whether great-grandpa Dmitri was really Kenyan after all. Often, the results were far less conclusive: the tests revealed that we were 12 per cent Neanderthal, distantly related to Genghis Khan’s less-heralded cousin, Mungo, and possibly allergic to liquorice. Not uninteresting, but not that exciting, either.
The tests revealed we were 12 per cent Neanderthal and distantly related to Genghis Khan’s less-heralded cousin, Mungo
Now, though, our DNA is the source of high drama, and no small amount of peril, thanks to the demise of 23andMe. The firm, once worth $6 billion (£4.6 billion), is on the verge of collapse and has filed for bankruptcy protection. Co-founder and CEO, Anne Wojcicki, has resigned. And while 23andMe says it is determine to carry on, its future looks uncertain.
The company has tried to reassure those like me who have has their DNA tested, insisting that there ‘are no changes to the way the company stores, manages, or protects customer data.’ But if the firm collapses, it’s anyone’s guess what might happen to the genetic blueprints of those who signed up. As professor Carissa Veliz, author of Privacy is Power, says: ‘If you gave your data to 23andMe, you also gave the genetic data of your parents, your siblings, your children, and even distant kin who did not consent to that.’
That’s right: millions of people’s genetic blueprints are now floating in uncertain waters, and no one really knows what happens next. What do you do with millions of data points detailing people’s ancestry, health predispositions, and genetic quirks when the company that collected them starts circling the drain? Sell them? Securely delete them? Accidentally leak them? The possibilities are endless — and few of them comforting.
If we’ve learned anything from the digital age, it’s that data is currency. Your online habits, search history, and social media activity are already being bought and sold. But unlike browser history, which I – sorry, I mean, other people – can at least hastily delete, your DNA is forever. As Jurassic Park taught us: once it’s out in the wild, good luck getting it back.
The fears go well beyond the idea you may suddenly be targeted with adverts for lactose-free cheese because your DNA says you’re slightly intolerant and Dairylea bought access to your file. There are real concerns here: insurance companies, for instance, would probably love to get their hands on genetic data to adjust premiums based on predispositions to certain diseases. Employers could hypothetically factor health risks into hiring decisions. Then there’s the whole issue of bioweapons being targeted against a person based on their genes.
Of course, it’s unlikely that we’re on the brink of some Gattaca-style future where genetic data determines your entire life. You’d like to think, given we shut down society for a couple of years over Covid, that there may now be a plan in place for engineered viruses. But it does make you wonder: what happens if 23andMe’s database gets sold off to the highest bidder? Will a pharmaceutical company use it for groundbreaking medical research? Will they effectively use it to profit off you, or will the sum of it be that we wake up one day to an email saying, ‘Congratulations! Your DNA has been selected for our exclusive premium ancestry NFT collection’?
The 23andMe situation is a weird mixture of comedy and catastrophe. The idea of our DNA being shuffled around in corporate bankruptcy proceedings is rather funny, or would be if it didn’t involve my own genetic blueprint. But this debacle raises concerns about data security, privacy, and the commodification of genetic information.
We signed up for 23andMe hoping to find answers. Instead, we got more questions: once which I, with an above-average percentage of Neanderthal DNA, am unlikely to figure out alone – even with the help of a genetic clone.
Comments