23andMe is Selling You to the Highest Bidder
Your genetic data may be held against you.
According to U.S. law, it's not your genetic data at all.
In March, U.S. Bankruptcy Court approved 23andMe's proposal to sell its customer's medical data. Investors loved it. This sensitive genetic information is the company's most valuable asset. Its stock jumped 158% when they got a green light to sell it to the highest bidder. How much is it worth? In 2021 the company was valued at over $3 billion based largely on its genetic data repository.
It's understandable if you think your genetic code belongs to you. But it doesn't. Not once you've handed over a biological sample. Doesn't matter if it's to see if your missing mother is still alive, or trace your roots to Abraham Lincoln, or even as part of a cancer treatment. Whoever gets the sample owns it.
The Federal Trade Commission did step in to say any purchaser of 23andMe's assets must "adhere to the company's existing privacy policies". Those policies demand any owner of the data keep it anonymous. They can't tie names to the samples. But of course, this is silly. We're talking about genetic code. It's literally a blueprint of you. DNA isn't anonymous. It's you.
The ruling to let them sell wasn't a surprise. The law on this was set. Corporate America was already earning billions with patient data, whether the patients knew it or not.
In 1983, John Moore was asked to sign a consent form that struck him as odd. He was visiting his Doctor at UCLA Medical Center, something he'd been doing for nearly eight years. Moore had leukemia, and he was getting ongoing treatment. Of course he'd signed consent forms before. Every doctor makes sure their patients agree to the treatment and understand the risks. But this new form included language about relinquishing rights to any products derived from his tissue.
Products derived from his own tissue? This was like something out of a Black Mirror episode.
Moore refused to sign.
Then he did some digging.
Turns out, Moore's T-lymphocyte cells produced a rare immune protein in significant amounts. His Doctor, David Golde, immediately saw the value. Throughout Moore's treatment, Golde collected blood, bone marrow, and other fluids, under the guise of being medically necessary. The truth? Golde was building a patented cell line called "Mo". Without Moore's knowledge, his cell line became a kind of bio-factory, producing materials for drugs that treated cancer, immune disorders, and more.
It was a biological cash cow. The Mo cell line generated over three billion dollars in value.
You'd think Moore should at least get a piece of this bounty. But despite never being told they were using his cells for profit, the California Supreme Court ruled he had no property rights over his own cells once they were removed from his body.
And the value of these cells doesn't end. Cell lines keep reproducing. They are, essentially, immortal.
To this day, corporations developing vaccines and cancer drugs use a cell line called "HeLa cells". The name comes from the woman who unknowingly gave her samples to science back in 1951: Henrietta Lacks. She saw her doctor for cancer treatment. She had a biopsy done. Without her knowledge, those cells became the first "immortal" human cell line.
Henrietta died never seeing any part of the billions made from her cells over the decades. And she's just one person. As part of a 2023 class action lawsuit, 23andMe revealed it housed genetic data from over fourteen million "Henrietta's". The scale is unprecedented.
DNA is more powerful to corporate owners than living cell samples. Your genome is the blueprint for everything about you. Your traits, your risk for future disease -- even facts tied to your family. It can be copied and shared and reanalyzed indefinitely. Whoever buys the data can use it, essentially, forever.
In most cases, this will be a good thing for society. Sure, you won't see any profit, but your bio specimens will help the world cure disease. Genomic data is already revolutionizing cancer treatments, personalized vaccines, and stem cell engineering.
But in the wrong hands, your DNA--your exact biological fingerprint--could be used to engineer a future version of you. With gene-editing tools like CRISPR, scientists can already introduce changes into DNA by guiding it with custom-designed RNA. They can edit living cells, tweaking traits in ways nature never intended.
It makes for a better tomato. Could it eventually make for a better human?
Who will end up with 23andMe's fourteen million genetic codes? A pharma giant looking to cure cancer? Or a tech firm hoping to prototype world's first human clone?
We're nearing the day when you get fired because they can replace you with a genetically modified and improved you.
If "you" is stored on a server at 23andMe, there's still time to hit delete.
