The Horrifying Reality of Consumer Genetic Testing

The American Society of Reproductive Medicine has acknowledged that anonymous sperm and egg donation may no longer be a thing. Australia outlawed anonymous donation entirely in 2017, and British law gave up and granted donor-conceived children the right to access their biological parents' information. But what about donors who were promised anonymity in the 1970s or '80s, when tests like this seemed as feasible as hover cars or world peace? Sperm banks can do their best to protect their donors, but it's only a matter of time before genetic testing makes "Who's your daddy?" a completely moot question.

To be fair, testing companies like 23andMe do have "tutorials" you're required to click through prior to viewing sensitive results. But like Pomerantz, most people go straight for the "I've read this and I agree" button. Worse yet, actual doctors are worried that direct-to-consumer genetic testing paints an incomplete picture of risk, giving patients a false sense of security and leading them to neglect future screenings. Of the thousands of possible cancer-causing BRCA mutations, for example, 23andMe screens for only three. So until one of these companies offers broad-shouldered androids who can devote an entire hour to guiding and comforting you, maybe stick with human beings.

In one instance, twin sisters Charlsie and Carly Agro both mailed DNA testing kits to AncestryDNA, MyHeritage, 23andMe, FamilyTreeDNA, and Living DNA. Now, the whole point of identical twins is that they're identical, right down to their genetic makeup. And yet not only did the results differ from one testing company to the next, but each company also calculated Charlsie and Carly as having differing ancestry percentages. For instance, one of them is supposed to be 2.6% "French and German," while for the other, that figure is 0. And this isn't a case of the twins having different fathers due to some wacky orgy mishap. 23andMe's raw data confirmed that 99.6% of their DNA is identical.

Ultimately, the twins' differing results probably come down to the worst villain of the 2010s: fucking algorithms. A team at Yale looked at both twins' data from all five companies and determined that, most likely, minor variations in their DNA led to computers giving different statistical estimates for each twin. Dr. Simon Gravel, a population geneticist and part of the 1000 Genomes Project, says that companies compare your DNA to known reference samples from different regions, narrow it down as much as they can, then essentially give it their best guesstimate. Eh, it's not like a lot of people take their heritage extremely seriously or anything.

All this information is stored via computer, so someone somewhere knows how to get it. In 2018, data from more than 92 million MyHeritage accounts was found on a private server. The company says that no DNA information was obtained, but this still suggests that we're all screwed. Think about the many ways your genetic data could be used against you. Would we vote for a presidential candidate if the opposing party exposed a predisposition for Alzheimer's? What if an unscrupulous company discovered a female job applicant had a BRCA mutation, knowing she'll probably need time off work for preventative care or intensive medical treatment? Would you marry the love of your life if you learned they're only 17 degrees removed from Rob Schneider? You get our point.

And again, you don't even have to take a test yourself to be affected. Police tracked down the Golden State Killer via genetic information a relative submitted to a genealogy site. Which is great and all, but could your dumbass cousin taking a test today mean you're denied insurance in the future? Thanks a lot, Gary. Hope finding out that you're 0.3% Lithuanian was worth it.

See, a federal law passed in 1996 (a more primitive time) allows companies to sell or share patients' medical information, as long as it's anonymous. This has turned these genetic databases into massive cash cows. 23andMe has sold its database at least 13 times -- including to drug company Genentech, which ponied up a cool $10 million to see the genes of customers with Parkinson's disease.

To be clear, you can "opt out" and deny companies permission to use your information for research. You can also request that they not store your data, which should theoretically diminish the chances you'll be involved in a breach. But the bigger picture here is that these companies are using customers' information to develop new medicines, then turning around and selling them at insanely high prices. Your cut from that windfall? Squat. They could at least give you a courtesy discount if you ever need said medicines, or maybe put your photo in the box so everyone knows you helped make it possible.

For more, check out What Your Doctor Wants To Tell You, But Can't (From A Medical Physician):

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