23andMe

Warning: If You Don't Want to Know the Results of a Genetic Test, Don't Take It

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Genetic Testing
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Giving his mother and father the gift of a 23andMe genetic test tore biologist "George Doe's" (alias) family apart. How? By discovering that he had a half-brother of whom he knew nothing. Doe tells his story over at Vox:

I have my PhD in cell and molecular biology. When I saw that I share about 22 percent of my genome with a person, I thought, "That's huge." It took a bit of time to realize Thomas and I actually share the same genome with my father. This is how it happened: when you share around 25 percent genetic similarity with someone, that means that either it's your grandfather, uncle, or half-sibling. 23andMe listed Thomas as a grandfather, which was confusing to me. I called my dad. All I had was his name, Thomas, and the fact that he's male. I just asked my dad, "Does this name sound familiar?" He said no. He logged into his account, and Thomas wasn't showing up at all. I was so confused. We figured out that at the very bottom of your profile, there's a little box that says "check this box if you want to see close family members in this search program." [Note: 23 and Me has since switched to an opt out system, where users will automatically be enrolled in the close relatives finder program.]

Dad checked it, and Thomas' name appeared in his list. 23andMe said dad was 50 percent related with Thomas and that he was a predicted son.

I freaked out. I said, "Can I call you back later?" I hung up the phone. I pulled out my genetics textbooks, called my contact at 23andMe, and asked if it was wrong. I called my sister and for three days, we agonized about what to do, we got into a fight, and thought. "Do we say something? Do we not say something?" Dad figured that because Thomas was listed as my grandfather, the company had made a mistake.

I reached out to Thomas over 23andMe and soon found out he had been adopted at birth and was searching for his birth parents for years. I immediately felt empathetic: he has his own daughter now, and they're going to the doctor and the doctor says, "Tell me about your family's med history," and he doesn't know anything. I thought, "He has a right to know. Who am I to stand in the way and say, 'You can't talk to my dad — it might hurt my feelings?'" …

At first, I was thinking this is the coolest genetics story, my own personal genetics story. I wasn't particularly upset about it initially, until the rest of the family found out. Their reaction was different. Years of repressed memories and emotions uncorked and resulted in tumultuous times that have torn my nuclear family apart. My parents divorced. No one is talking to my dad. We're not anywhere close to being healed yet and I don't know how long it will take to put the pieces back together.

After this discovery was made, I went back to 23andMe and talked to them. I said, "I'm not sure all your customers realize that when they participate in your family finder program, what they're participating in what are essentially really advanced paternity tests." People find out that their parents aren't who they think they are. They have nearly a million people in the database. If there happens to be anyone in there you're related to, they'll find your match. This is a solid science.

What's the right thing to do? I am a long-time happy customer of 23andMe and checking the DNA relatives section, the closest one is someone who shares with me 2.19 percent of their DNA as measured by the company—basically a 2nd to a 3rd cousin. The 23andMe DNA relatives site is now opt-out and begins with a warning:

DNA Relatives now includes all matches, including close relatives, allowing you to connect more easily with your family members on 23andMe. With continued participation in DNA Relatives, it is possible that you may discover unexpected close relatives.

If you do not want to be visible to close relatives, you may opt out of DNA Relatives. By choosing not to participate in DNA Relatives, you will no longer appear as a match for any of your genetic relatives.

You can opt in or out of DNA Relatives at any time from your Account Settings page.

Is that enough? I recall that when 23andMe reported the results of its test for APOE4 alleles* that dramatically increase the risk of Alzheimers disease, the company festooned the click button with all kinds of warnings telling the unwary to turn back if they feared to know. (Of course, that was before the FDA forbade the company to tell customers such data.) So I think that George Doe is right when he writes:

I would want a warning saying, "Check this box and FYI: people discover their parents aren't their parents, they have siblings they didn't know about. If you check this box, these are the things you'll find." And I'm the one with my PhD. I understand how this works. But I didn't think through all of the practical implications, in part because I thought, "This wouldn't happen to me."

But that's a just a temporary measure. And I suspect that most people will click the button anyway. The genetic information genie is out of the lamp.

*For what it's worth, I did want to know my Alzheimers disease risk and so clicked the button. With respect to those alleles my risk of Alzheimers disease is about half of the average for males of European ancestry according to the company.

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  1. “He went to his mama, he covered his head
    He told his mum what his father had said
    His mother, she laughed, she said, “Go man, go
    Your daddy ain’t your daddy, but your daddy don’t know”

    Madness – Shame And Scandal

  2. Clearly, all these types of tests and stuff must be banned. Except for the government if it needs to do it for terrorism or something.

    /derptardation

    1. Ignorance is bliss.

      Derp

  3. Fuck the FDA, and their retroactive application of the rules.

  4. This is actually one of the coolest parts about 23andme.

    1. Well, that and finding out that I’m 83rd percentile in Neanderthal genome. Thus explaining my stockiness, resistence to cold, and propensity to savagely kill and eat raw game.

      1. Also knowing I have a significantly lower risk of cirrhosis was helpful

        1. So…drink?

      2. I’m 84th percentile.

        And it goes without saying that Warty is not only 100th percentile, but in fact 100% Neanderthal.

        Makes you wonder whether Neanderthals had some kind of Libertopia before they were overrun by statist Homo sapiens hordes.

  5. WTF?

  6. I read the article from a yahoo link. There is so much information missing from the story. Like: was the half-brother older or younger than him; had his dad ever donated sperm; could his mom just not get over the idea that his dad had another kid or was dad getting some on the side? Inquiring minds want to know.

    1. Yeah, it’s an interesting story, but some lousy, lousy writing and editing.

      But I also discovered through the 23andMe close relative finder program that I have a half brother, Thomas.

      OK, interesting; let’s learn more about how this happened.

      I have my PhD in cell and molecular biology. When I saw that I share about 22 percent of my genome with a person, I thought, “That’s huge.” It took a bit of time to realize Thomas and I actually share the same genome with my father

      Uh, of course you share about 22 percent of your genome with “a person” (your grandfather, uncle, or half-sibling, like he says). But what “a person” are we talking about? If he means Thomas, why does he go back and forth between saying “Thomas” and “a person”?

      This is how it happened: when you share around 25 percent genetic similarity with someone, that means that either it’s your grandfather, uncle, or half-sibling. 23andMe listed Thomas as a grandfather, which was confusing to me.

      Christ on a cracker, could the author not have just written, “In my results, 23andMe listed someone named Thomas as my grandfather, based on the fact that we had about 22 percent genetic similarity”?

      And then the author jumps all over the place without really explaining exactly what happened. It would have been clearer had he just left it as “I discovered I had a half-brother I never knew about, and that caused a lot of family turmoil.”

  7. To be fair, George Doe, it could be way worse. You could have found out you were fucking your sister. Though most of those guys don’t seem to care.

  8. Dont pick at scabs. They will bleed and tend to get infected.

  9. I’d like to think most intelligent people would find the emotional maturity to deal with a situation that occurred a long, long time ago. So what if you’re genetics aren’t what you thought? Is your life retroactively going to change?

    1. This. Who cares? You are who you are. Do what you can and live YOUR life.

  10. Obviously, I’m not asking for oversight or regulation, so don’t lump this in there…

    This is very similar to the problem Apple finds itself it with the iCloud nude photos breach. It is very easy for people to do things that compromise them and may have big implications. It would be good user interface to make it more difficult to move sensitive photos to iCloud. It would be really good if the UI could forgive bad or mistaken decisions. This requires some real thought and planning for exceptionally bad scenarios.

    23andMe’s UI could explain what these matches mean or potentially mean, and could help people make decisions about how to manage them. It’s just as reasonable that George Doe wouldn’t want to reach out to his half-brother. Or perhaps he would know somehow that his Dad wouldn’t either. This shouldn’t be a tool for the half-brother to force his way into something another party doesn’t want. Unfortunately, helping individuals manage this the way individuals want is a responsibility 23andMe needs to take on, just as Apple needs to do more than slap more technical security on cloud photos if it wants people to trust its cloud solutions.

  11. I don’t trust my DNA to anyone but Maury Povitch.

  12. I read this article today. Now, read Vox’s description of itself:

    Vox.com is a general interest news site for the 21st century.
    Its mission is simple: Explain the News.

    Vox is where you go to understand the news and the world around you. It treats serious topics seriously, candidly shepherding people through complex topics ranging from politics, public policy and world affairs to pop culture, science, business, food, sports and everything else that matters. Amassing over 5MM unique visitors in just over a month, Vox’s unprecedented inception represents one of the most successful launches in digital and proves that this new kind of news site is truly fulfilling the previously unmet demand for explanatory journalism.

    What a joke. Though I guess a joke is what you’d expect from Ezra Klein and Matt Yglesias.

    1. shepherding people through complex topics

      Cause sheep need shepherds.

  13. I have my propensity for alzheimers checked, but I can’t remember what they said….

    1. Let’s go hided Easter Eggs!

  14. Ron, this is the kind of article I was referring to in other thread.

  15. You people know that 23andMe is a clone mill, right? They’re probably just going to harvest the organs from the clones they’re making from your material to sell back to you but who knows, they could be planning to replace you altogether.

    1. +1 Sixth Day

    2. They’re going to discover they cloned the wrong guy.

      PS The “wrong guy” is ME.

  16. Wait until you find out that the company sold your info to your insurance company, and your rates just tripled.

    1. Some of us are ubermensch and fully expect our insurance rates to be halved in light of our genetic information.

  17. I believe the appropriate response is “cool story bro”.

    1. Needs moar drama.

      Like the half-brother snaps and goes on a rampage.

      Or Huntington Disease.

      Or his half-brother is, in actuality, his grandfather.

      You know, you’d think that a PhD in Biology could come up with something cooler than this.

  18. The story is weird. The author has a biology PhD, teaches a class in genetics and:

    1) Has to run to a textbook to find out what it means that Thomas shares 50% of his DNA with the author’s father?

    2) Doesn’t know that a surprising number of people turn out not to be related to as many people in their patrilineal ancestry as they believe?

    Even with the “find my relatives” opt-out, there’s always the risk that someone will find out that their not their father’s biological child, right?

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