Sending your spit sample to a startup may not seem like such a good idea, after all. On Friday, 23andMe, the company that allows consumers to get portions of their genome tested for a relatively modest fee, announced that “a number of new 23andMe customer samples were incorrectly processed” by the lab 23andMe contracts” to carry out its tests. This resulted in “up to 96″ customers receiving DNA results that were not their own — a major mistake that led to some very confused customers, and will doubtless help bolster the push to increase regulation for direct-to-consumer genetic testing. 23andMe has notified all affected customers about the issue.
It’s hard to overstate how disturbing receiving the wrong DNA results can be. One customer, writing on 23andMe’s community forums after receiving the results, recounted her experience in a post titled “Results in, my son is not my son?“. Here’s an excerpt:
I checked my son’s and 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… A month before my son was born two local hospitals had baby switches. I panicked and I checked over and over… 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.
According to the blog Genetic Future, the problem likely stemmed from a single mishandled 96-well tray of customer DNA samples. It’s worth pointing out that the error resulted from a mistake at the contracted lab (in other words, 23andMe didn’t run the DNA test itself). But 23andMe was still responsible for reporting that data to its customers, and in this case its safeguards clearly failed. 23andMe says it is taking measures to ensure this doesn’t happen again:
We are currently putting additional procedures in place that will add an extra layer of safeguards to help assure that similar incidents do not occur in the future. We are deliberating on a process that would include removing manual steps at the lab, completely automating the sample analyses, and implementing further checks of the data before it gets loaded into customer accounts.
Granted, botched lab results are hardly a new phenomenon. But knowing that such problems are surprisingly commonplace is hardly comforting. Your genetic profile is just about the most sensitive data anyone could have on you — it can, or eventually could, be used to analyze your family’s history, your predisposition to diseases, and even your child’s genetic risks.
That said, it could have been worse. The Great Beyond, a blog run by the renowned science journal Nature, consulted with Sharon Terry, CEO of the non-profit Genetic Alliance advocacy group. Terry said that the damage was “relatively minor and quickly rectified”, but went on to say that genetic testing likely needs “multiple levels of oversight and assurance”.
I’ve long had a love/hate relationship with 23andMe and companies like it. On the one hand I think it provides a glimpse into the extraordinary things we’ll be able to do in the future, once we have a firmer understanding of our genome (and how we can use that information to create better treatments). And in some cases the information 23andMe provides can be useful even today. But there’s also the fact that this is largely uncharted territory. These companies are establishing precedents, and we can’t afford to have genetic mixups like this one become a fact of life.