23andMe Sends People The Wrong DNA Results [and what is (and is not) interesting about it]
June 9, 2010
As reported Monday (TechCrunch article here), 23andMe recently sent the wrong DNA results to up to 96 customers. Long story short, it appears the lab they farm the sequencing out to (LabCorp) mixed up the labeling on one of their 96-well trays (a standard sized plate) and, well, that meant that when some people logged on to see their results, they ended up seeing the results of someone else.
Beyond the obvious privacy and data security questions this raises, I think it’s the response from 23andMe customers that’s most interesting and illuminating. I will paste their feedback in below since, unless you have an account, you won’t be able to see it (if you do have one, see it here.)
Title: Results in, my son is not my son?
Yesterday I received a message that my son and my daughter’s results were in. I rushed to carrier status and checked, she was negative for all the diseases. I checked my son’s it stated that he was a carrier for hemochromatosis, I was upset. How could he be a carrier and we weren’t. Well my husband’s result’s weren’t in yet so I would wait and see. Still upset I checked family inheritance and noticed my daughter shared with me, and then I checked my son’s. He was not a match for any of us. I checked his haplogroup’s and they were different from ours. I started screaming. A month before my son was born two local hospitals had baby switches. I panicked and I checked over and over. My kid’s were sitting at the computer because we all wanted to see the results. My son laughed but he looked upset. I called my sister in tears. She being the pragmatic one instantly told me to stop crying. She reminded me we took a thousand pictures of his birth and every breath he took the first few months. She told me to check the traits. When I checked for eye color I noticed he was GG (blue eyes) we are AG. My son does not have blue eyes. I compared genes and I noticed he did not compare with any African Americans. His closest results were European. Then I read a post from another person who had wrong results. I realized these results were wrong. I sent an e-mail to 23andme. I received the standard 3-5 days response.Upset, I sent Shirley Wu an e-mail, she said she would forward it to customer service. That’s it. So far I haven’t heard a word from 23andme.
Later I found my son in my bed asleep and hugging my pillow. He did not go to school today, he said he was sick. I told him it’s a mistake.
Someone out there has new results maternal L2c2, paternal E1b1b1a, and those are my son’s results. I looked at relative finder my son has 56 relatives. My son’s Ancestry painting came up today, it says 99% European. I share with 3 of the relatives. I hope they don’t send an invite. Thank god the results were totally off or I would have been in linbo for days. I hesitated before I sent this post, I wanted to give 23andme time to get back to me with some explanation. I am still waiting. I am still screaming inside………
In the comments section another user wrote,
23andme has just sent my son’s girlfriend a notice about a mistake in her processing and took down her results. She was just about to write in and ask how they determined she was Asian. She has spent the day in shock.
I don’t know if she yet called her mother, but I know she was wondering what to ask. She came back 100% Asian. We talked about all possibilities..and some of them were odd and disturbing.
We have spent the entire day discussing her 100% Asian ancestry painting and taking a new look at her pics. Even the high risk breast cancer results were less disturbing to her than what the ancestry meant.
23andme…time for some mea culpas here…
So why does this matter?
Well, before that, I think there’s an important point to be made: the root problem here is not a direct-to-consumer (DTC) specific one - any lab using 96-well plates could have confused labels (or whatever exactly happened here.)
So what’s this “96-well plate” business, you ask? Basically, when a lab is running the same test on a lot of samples, it’s much easier to have one big plate with a lot of wells than it is to have a bunch of individual test tubes. Think about it — would you rather carry around 96 individual test tubes or one plate with 96 wells in it? Since it’s easier and faster, this plate method also contributes to scalability, which then helps bring down costs. So, not only would a lab sequencing for 23andMe use this, but any lab working with a lot of samples that require the same procedures.
Non-DTC examples:
- BRCA1 and BRCA2 genetic testing (which is ordered through a doctor)
- Hepatitis B immunity (checking to see if you have it, that is)
Point being: this mistake didn’t happen because these tests were offered DTC.
Now, what I do think important here is the responses from 23andMe users. DTC companies have long stressed that they aren’t providing medical testing but genetic information (and thus shouldn’t be regulated in certain ways)– but what does all that mean? The first user’s experience (above) shows that the first thing she does when she gets her son’s results is check for carrier status. It’s true that whether or not I’m a carrier for, say, a SNP associated with hemochromatosis, is genetic information — but is getting that information also the result of a medical test? Given the intensity and speed with which she checked for those things, it sounds a lot more like she viewed it as a test than as just “genetic information.” [Maybe I feel this way because “information” sounds so neutral, but “medical test” more closely captures the way we respond to our testing “results.”
To be honest though, I don’t have enough experience with how regulations view the difference to say, but I think the distinction is not so obvious — and the non-obviousness isn’t just a function of how our policies and regulations view the difference. How do people truly view the information they’re given through these tests? An interesting study would be to take people who are told they are a carrier for something and see if they act differently — see if, upon telling their family, if their family treats them differently. How do we process that sort of information?
Why is HIV testing a medical test but the results of a DTC genetic test not? Because an HIV test tells you whether or not you will actually develop certain ailments? The BRCA tests don’t tell you definitely that you will or will not get breast and/or ovarian cancer, but they’re considered medical. Difficult…
Other food for thought:
-The community feedback and advice given to users who wrote about confusing or upsetting results was strong and helpful — I think it shows that, if you’re willing to engage with a community of active and interested participants, you can get constructive information without a doctor middleman. On the flip side, it sounds like users didn’t hear back from 23andMe for days — and thinking you were adopted for a few days doesn’t sound so great.
- DTC genetic testing results aren’t just “for fun.” There were unquestionably traumatic identity crises going on with some of these people. And why? Because when they first clicked through and got their results they were ready to accept those results as telling them deep truths about themselves. They weren’t rapid-fire clicking to carrier status or ethnic background to take a glance, eat some popcorn, and then go out with friends and forget about it. No, this information meant something to people.
It will be interesting to see what comes of this… I’m willing to bet Walgreens is counting its blessings right now, though.