For years, 23andMe pulled the scam of convincing about 12 million people to pay them $99 to sequence “their” genome. They scammed us into believing that “my” genome is “mine” alone, or that “your” genome is “yours” alone.
But that’s not how human genomes work. Half of “my” genes are also half of my father’s genes, and the other half of “my” genes are also half of my mother’s genes…and so on and so forth.* What 23andMe tricked us into giving them was not our “personal” genomes but also the half of the genomes of our parents and our children, a part of every one of our family members going back for generations, and part of the genetics of every one of our future family members for generations to come.
Because of the way genes are transmitted, we do not “own”them in any way analogous to the way I might own my bicycle, my hair, my chickens, my artwork, my patents, my identity, or even my genitals. None of our ideas about either bodily autonomy or personal property should have applied to our genomes, but in the early-2000s we got conned into thinking they should—all in exchange for “health” data that the US FDA has long warned the company was misleading, worthless, or both.
In the last few months it’s been revealed that 23andMe got hacked so badly that they’ve lost control of data for 6.9 million customers, which included name, birth year, gender labels, the percentage of DNA shared with relatives, ancestor birth locations, names of extended family members, profile pictures, and location. If we apply some very simple genetic logic to this, that means the hack impacts not just these 6.9 million 23andMe customers, but at a minimum it also impacts 50% of every parent and child of these customers, and 25% of every grandparent and grandchild.
If we think for even a second about the data involved here—not just ancestry, but age, household, relationships, and location!—then every partner, caretaker, spouse, etc. might also swept up in this. There are horrifying early reports that hacked 23andMe data are already being used for racially-motivated targeting. And it doesn’t stop with these 6.9 million stolen customer records: it will affect extended family members across generations and for generations in the future.
I’m 100% aware that kin relations are not dependent on genetic relations and vice versa, and I’m happy to debate what values we should ascribe to genetics in general. But it’s just biologically wrong to think that our individual genomes have value only to ourselves as individuals. At some point 23andMe as a company was valued at $6 billion, but today in early-2024 the company has become almost worthless. The people who ran this con on society and then lost everyone’s data not only deserve to lose this money, but should probably be asking their customers for moral absolution for generations to come.
/rant
Daniel Liu, History of Science 