The Horrifying Reality of Consumer Genetic Testing

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The Horrifying Reality of Consumer Genetic Testing

Anyone can easily order a DNA test now, unlike in the olden days when folks had to go on Jerry Springer to find out if their little brother was actually their great uncle or something. But, much like your family history, the world of consumer genetic testing is full of dark secrets you might prefer not to know. If so, tough luck, because we're still telling you about it. Like how ...

These Tests Are Tearing Families Apart

One huge selling point of DNA testing is finding previously unknown relatives and expanding your family tree. But for some, that means opening a huge, depressing can of worms. Imagine ordering a DNA test hoping for some light conversation material for the next time you see your dad, only to find out you have no dad -- your biological father was your mom's 18-year-old prom date, and he died the year before. Or you were conceived via sperm donor, so you're not as Jewish as you always thought you were.

These soap-opera-esque plot twists have become so common in real life that there are now multiple online support groups for people whose sense of identity has been shattered by DNA testing. One 6,000-member group gets so many applications that they have screen them to turn away those whose surprises are considered too distant (like if you find out you're descended from Attila the Hun and not Genghis Khan, like your mom always told you).

In some of the worst cases, the results of a test don't merely cause emotional pain to an individual, but destroy whole families. One man was devastated to learn his beloved daughter was the product of his (soon to be ex-)wife's affair. The couple divorced, their son blamed the daughter for breaking up the family, and the dad called out the son for blaming the daughter. Pretty much everyone but the dog ended up resenting each other. We're reasonably sure they'll have to create a whole new branch of psychology solely to deal with these issues.

Related: The 6 Creepiest Things Hiding In Your DNA

There's No Longer Any Such Thing As Anonymous Sperm Donation

Part of the appeal of wanking it for cash (besides, you know, wanking it for cash) is that it can be completely anonymous if you want. Your broke college ass can sell sperm for some ramen money, and the clinic will make sure that a teen who looks like you won't come bug you in 18 years (probably to beg for ramen money). Or at least, that's how it used to be.

Now, lots of "anonymous" sperm donors are discovering that the contents of those plastic cups from long ago have become living, breathing human beings. And unlike the cup, that human might want to get to know you. The donors themselves don't even need to take a test to be exposed; all it takes is some random relative buying a 23andMe kit for kicks, and you're busted. One donor was tracked down through his nephew, who took an over-the-counter test. So many biological sons and daughters have found him that they created a welcome packet including the man's photo, medical history, and an email address he uses to "reluctantly" answers questions. (Mostly "Do you have this weird thing on your junk too?" we're guessing.)

The Horrifying Reality of Consumer Genetic Testing
Whelshsk/Wikimedia Commons
"Have you started balding yet? How about now? Now?"

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.

Related: Inside The Shady World Of DNA Testing Companies

You Might Get Really Difficult Medical News Without A Doctor Around

OK, so assume your parentage is fairly normal. You're not Rosemary's Baby, you weren't conceived via sperm donor, and nobody's had any interesting affairs. You're good to go, right? Not if the test you're taking also covers health issues. Finding out your dad isn't your dad from a monitor is already sucky enough, but finding out you might have some sort of hereditary illness is even worse. You can't cry into your computer's shoulder when it tells you you'll probably get cancer.

Journalist Dorothy Pomerantz clicked open her 23andMe results one evening and learned she had the dreaded BRCA1 mutation ... and a 72% chance of getting breast cancer. While this potentially life-saving knowledge is important, Pomerantz feels the manner in which she found out was beyond horrible. Because this bomb wasn't dropped by a doctor or genetic counselor, Pomerantz turned to the most readily available source of information: Dr. Google. Which, depending on how your search goes, could either convince you that you have five minutes to live or that cancer is a government hoax designed to steal your boobs/ovaries.

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.

So if you don't have one of the variants we tested, you still have risk of a developing cancer. In fact, most cases of cancer are not caused by the ge
23andMe
"Please disable your ad-blocking software to find out if you're dying."

Related: 6 Real DNA Mutations That Make Ordinary People X-Men

The Tests Might Not Be All That Accurate

Extracting DNA from your cells and breaking it down gene by gene is science, to be sure, but using those genes to identify your ancestors' probable origins and migration patterns is more like an art. There's a lot of interpretation going on. Sometimes a whooooole lot of interpretation.

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.

Related: 5 Insanely Frivolous Uses Of DNA Technology

DNA Theft Could Be The Next Big Thing In Data Breaches

Let's face it, we've all sort of thrown in the towel and made peace with the fact that there are hackers and unscrupulous companies out there who know all your financial information and porn browsing habits. But ... are you ready for them to have access to the details of your genetic code too? Because that's where we're going.

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.

Related: 5 Unfortunate Biases Hard-Coded Into Your DNA

Testing Companies Are Making A Fortune Off Your Stored DNA

At this point, you might be wondering why these companies store your data at all. You've gotten your results. You know where you came from (sorta), who you're related or not related to, and maybe even how you'll spend your final days within this mortal coil. Why don't the companies simply destroy your data before someone can steal it and use it for dastardly deeds? Because money, of course. Lots and lots and lots of money.

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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