The Scary Truth Behind 23andMe

23andMe is an at-home genetic testing service that’s affordable, quick, and easy. You can get information about your health, your ancestry, and your interesting quirks. If that sounds too good to be true, that’s because it is. These kits can cost less than a hundred dollars, and that’s because you’re paying for the service in other ways — ways you might not even know about.

Keep reading to learn more about how using 23andMe might be putting you at risk.

What’s In A Name?

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If you’re not familiar with the science behind genetics, you may not know where the name 23andMe comes from. If you remember all the way back to grade school science class, there are twenty-three chromosomes (which are DNA molecules) in a normal human cell.

Chromosomes have an “x” shape, which explains the company’s criss-cross logo. Almost everything about you, from your eye color to your ancestry to your susceptibility to certain diseases, is coded within those twenty-three chromosomes.

The FDA Isn’t So Sure About It

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23andMe have had their fair share of issues with the U.S. Food and Drug Administration. Normally, when people find out important genetic information, they do so in a hospital alongside a qualified genetic counsellor who can talk them through what different gene markers mean and what they should do next.

It took a long time for the FDA to allow 23andMe to release information about medical conditions (including Parkinson’s and Alzheimer’s) to customers.

There’s A Reason For All Of That Secrecy

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I know what you’re thinking. Why shouldn’t people be entitled to information about their own health? Why would the FDA want to keep that information from us?

Well, the thing is, genetic markers of a disease are more complicated than you might think. There isn’t one Alzheimer’s gene that you can have that predicts that you will get Alzheimer’s. There are a series of genetic markers that have been proven to have some correlation with Alzheimer’s. Just because you have some or even most of those markers, it doesn’t mean that you will definitely develop the disease.

That’s Where The Professionals Come In

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You need a doctor or a qualified genetic counsellor to walk you through the results of any kind of genetic testing. There are steps you can take to live a more healthy life based on your genetic test results.

You can even use information about your genetic makeup to help you with family planning. But trying to make sense of all of that information on your own without the guidance of a professional is straight up dangerous.

Always Consult Your Doctor

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Personal genetic testing kits are all the rage now. You can even get a home testing kit for your dog. Just remember that you shouldn’t try to navigate the results of these tests on your own. If you see anything that concerns you, always talk to a professional.

Some experts in the field are worried that people may try to adjust their medications based on their genetic results without talking to a doctor first. That’s a bad idea. Definitely don’t do that.

The FDA Shut It Down

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Back in 2013, the FDA actually ordered 23andMe to stop manufacturing and selling its product. They were fed up with how the 23andMe team was responding to rules and regulations in the industry.

Basically, they weren’t responding at all, and the FDA was not okay with that. Would you take a drug that the FDA didn’t approve of? If the answer to that is no, you may want to reconsider investing in this product.

23andMe Doesn’t Discriminate

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We normally hear about discrimination in a negative context. It’s bad to discriminate against people or groups of people. But when it comes to genetic information, not all markers are created equal. There are some genetic indicators that are strong predictors of certain conditions or diseases, and there are some that are weak predictors.

23andMe doesn’t discriminate when it comes to genetic markers. They give you all of the information and present all markers as equal. It’s up to you to do the research to weed out the strong genetic markers from the weak.

Oh, Also, They’re Selling Your Data

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You didn’t think that this relatively cheap home testing system came without a catch, did you? 23andMe has signed a 300 million dollar deal with a drug company called GlaxoSmithKline.

That means that this drug company has access to all of your personal genetic information. Seriously, this is Black Mirror level creepy. If you still aren’t weirded out by the implications of this deal, keep reading and I promise they will become clear to you.

How Will Drug Companies Use Your Data?

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23andMe isn’t the only private genetic testing service that’s selling your data. Basically, every home kit out there is involved in some form of data selling. That’s how they make the bulk of their money.

Drug companies will use your data to determine which drugs to develop and then sell those drugs directly to you through targeted marketing. These drug companies will also use the information to select clinical trial participants.

Leaks Happen All The Time

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If you know anything about data, you know it isn’t exactly secure. Even huge tech companies with top-notch security teams still get hacked all the time. That means that all of your data is basically public information. It’s not a question of if data will leak, it’s a question of when.

People can easily use your genetic information against you. Insurance companies could use your prospective medical future (forget medical history) as a reason not to cover you.

23andMe Can Hold On To Your Spit For Decades

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As soon as you spit into that tube and sign that consent form, you are opting into things you may not even know about. These genetic testing companies hold on to your spit and the DNA extracted from your spit for decades (literally).

Who knows what technological advances we’ll make in the next ten years? I think it’s a little farfetched to say that 23andMe would clone you… but then again, is it too farfetched? Maybe I’ve just been watching too much Netflix.

GlaxoSmithKline Isn’t The Only Company 23andMe Works With

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You know that thing that happens when you look up a pair of sunglasses on the internet and then suddenly you get a whole bunch of ads for similar sunglasses? Well, that’s how marketing works now, and it’s super effective.

What if companies weren’t just marketing to you based on your search history, but also based on your genetic makeup? 23andMe also sells your data to brands like P&G Beauty, the company behind Pantene shampoo and Pepto-Bismol. P&G might know that you have a dandruff problem before you do.

This Might Be A Good Thing

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Before you get all up in arms about 23andMe selling your private information, let’s hear their side of the story.

23andMe CEO Anne Wojcicki wrote, “We all have some disease or health issue that we care about. 23andMe has created a research platform to enable interested customers to participate in research — to not wait for solutions to appear, but for people to come together and make discoveries happen.” That all sounds nice, but keep in mind that they’re making a lot of money off of these “discoveries.”

Whatever You Do, Don’t Get Arrested

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Law enforcement knows these companies have your DNA, and they definitely want it. They’re already asking. Now, this one is a bit of a double-edged sword. On the one hand, DNA evidence has been super helpful in apprehending dangerous murderers. The Golden State Killer case was solved using DNA from relatives.

Just know that whenever someone you’re related to gives their DNA to one of these at-home testing companies, they are also giving up some information about you. You’re going to be easy to find, is all I’m saying.

Still Worried About Facebook?

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Remember when everyone was mad about Facebook sharing people’s personal information? Well, Facebook has nothing on 23andMe. I mean, if you’re not okay with Facebook sharing your friend list with advertisers, you really shouldn’t be okay with 23andMe sharing your biometrics.

Yeah, there are pros and cons to this kind of information swirling around in the universe, so you probably shouldn’t just spit into a tube without being aware of what’s really happening.

You Get The Results, But Not The Resources

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Sure, 23andMe will tell you how likely you are to develop a debilitating disease like Parkinson’s or Alzheimer’s, but they won’t tell you how to cope with that heavy news. They won’t direct you to any resources or tell you what your next steps should be.

I think if 23andMe is going to give out that kind of information, they should tell you what to do with it, and what your first steps should be on that road to recovery.

No Test Is 100% Accurate

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Even if 23andMe is 99.9 percent accurate, with the number of people who use their service, that means that thousands of people have already received false information. And that’s assuming that the test results are 99.9 percent accurate. The actual accuracy of the tests is impossible to find on 23andMe’s website.

Imagine changing your whole life because of a false positive? Imagine worrying about Developing Parkinson’s when that may not even be genetically indicated?

It’s Complicated

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Just because you have one or more copies of the APOE4 genetic variant does not mean you’re destined for Alzheimer’s disease. Also, there are plenty of people who get Alzheimer’s who don’t have the APOE4 genetic variant. Genetic testing is not a diagnosis.

Your genes provide some answers, but not all of the answers. Your overall health is a complicated mix of genetic and environmental factors. Use these diagnostics to ask more questions, not to jump to conclusions.

Who Knows What They’ll Be Able To Predict In The Future

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There are so many genes that we don’t know about. There are so many diseases and health conditions that haven’t yet been linked to genetic variants. You might sign up now expecting to hear about your ancestry and affinity for bitter foods, but years later, when 23andMe still has your DNA, they might be able to tell if you’re likely to develop cancer, or have a child with downs syndrome.

Just because that information isn’t available yet, that doesn’t mean that it won’t be available. 23andMe has your genetic information for a long time, so you have to think about future discoveries.

You Might Be In For A Bit Of A Shock

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One 23andMe customer knew very little about her father’s ancestry, but she knew her mother’s side was 100% Italian. When she got her test results back, it turned out that her mom’s side was 80% Jordanian.

Almost everyone in her family was shocked, except for her great grandmother who knew they were Jordanian the whole time. Apparently, when they were immigrating to America, they went to Italy first because they heard there was a big Italian population in New York. They just pretended they were Italian. They made Italian food and even spoke a bit of Italian.

Even Triplets Don’t Get The Same Results

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Inside Edition had a set of triplets send their spit into 23andMe and The triplets got wildly different results from both services, which is pretty crazy considering they came from the same womb. The triplets even got different ancestry results.

Identical triplets are genetic clones of each other. They may have different epigenetic developments, but their essential building blocks should be the same. That’s what makes them identical triplets.

Be Careful About How You Spit

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Unless you want 23andMe to assess the genetic makeup of the turkey sandwich you had for lunch, you better make sure your mouth is clean before you spit. I wonder what would happen if you and a friend spit into the same vial? Would 23andMe even be able to detect that hybrid saliva?

I have so many questions about their process and the accuracy of their product, but I’m not sure if I’m willing to try and find out just yet.

Get Ready To Uncover Some Secrets

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There are a whole bunch of stories floating around the internet about people finding siblings and half siblings they never knew they had. One 23andMe customer got his parents and himself 23andMe kits for their anniversary, only to discover that a man named Thomas living in another state was actually his biological brother and his father’s biological son.

It’s going to be a whole lot easier to catch cheaters now.

Who Is Anne Wojcicki Anyway?

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Anne Wojcicki is the founder and CEO of 23andMe. Her father was a professor and she basically grew up on the Stanford campus in San Francisco.

She was actually married to the co-founder of Google, Sergey Brin, from 2007 to 2015. They have a daughter together named Chloe Wojin who was born in late 2011. Anne is super smart and she’s been able to navigate 23andMe through several legal battles and FDA disapprovals.

The Tests Work Better For Some Ethnic Groups

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Geneticists have studied more people of European descent than other groups, so they have more data on white people.

23andMe is aware of this, so their reports will include warnings that the test results are “most relevant for people of European descent” (for Alzheimer’s), “. . . for people of European, Ashkenazi Jewish, and North African Berber descent” (for Parkinson’s), and “. . . for people of Ashkenazi Jewish descent” (Factor XI Deficiency).

23andMe Isn’t Your Only Option

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If you really want to find out more about your genetic makeup, you don’t have to shell out $200 for an at home testing kit. You can book an appointment with a geneticist or a genetic counselor. Sometimes insurance will cover these services, especially if you’re pregnant or considering getting pregnant.

Just remember that you have options, and that you don’t have to give up your private information to find out more about who you are.

Family History Is Important

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Genetic markers work in tandem with your family history. Mary Freivogel, president of the National Society of Genetic Counselors, said,

“My concern is that they’re giving the same report to patients with and without a family history of a particular disease. For some diseases, the chance that a disease-linked gene will lead to the disease is greater if the disease runs in the family. That sort of analysis is what genetic counselors provide.”

The News Doesn’t Just Impact You

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You may be okay with learning whether or not you have markers associated with Alzheimer’s disease, but your siblings and parents might not be. If you have certain disease markers, chances are that they do too. This information doesn’t just have implications for you, but for everyone close to you, including people who might not even be born yet.

You might want to talk to your family before you get tested.

They’re Not Just Collecting Your Genetic Information

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23andMe has a smartphone app, which means that it’s collecting data about your behavior and internet usage through the use of cookies. This has become common practice for most online enterprises, but it’s still something to be aware of if you’re concerned about privacy.

I have to tell you, though, If you’re concerned about privacy, the future isn’t looking all that private. Data sharing might just be something we have to get used to.

Having Second Thoughts?

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Are you rethinking that 23andMe kit you bought your mother for Christmas? Or do you think the privacy breaches and uncertain results are worth the gamble? However you feel about at home genetic testing, just make sure you go into it fully informed. Don’t sign anything without reading it first, and think before you spit.

You may be totally fine with being involved in studies— you might think it’s super cool. I think 23andMe is doing a lot of innovative work. I just wish they’d be more honest about their motives.