Thoughts on being taken in by 23andMe

A while ago, I paid for a personal genomic saliva kit from 23andMe, a California firm that screens saliva samples for a variety of known genetic trouble spots. Recently, the FDA ordered 23andMe to stop marketing the testing kits, saying that the claims made by the marketing are not backed by science, making possible a dangerous scenario wherein false positives or negatives encourage expensive and unnecessary surgeries, treatments, or tests. Basically: 23andMe’s test might tell you that you carry the BRCA1 or 2 mutation, and you might get a preventative double mastectomy like Angelina Jolie.

This has received a lot of press, in part because 23andMe is backed by Google, run by Sergey Brin’s estranged wife (whose marriage blew up in a public and painful way), and has operated for over five years without receiving another FDA cease-and-desist order. It’s a perfect storm of healthcare news, tech industry gossip, and excuses to talk about Angelina Jolie (see above). But it’s also compelling because it’s about the future of healthcare, and the growing trend toward personalizing that healthcare with the quantified self in mind. 23andMe’s service is popular for the same reason the FitBit is popular: it purports to take an objective, completely personal measurement and then offers encouragement and advice based on that measurement. No more reading studies about sample populations. No more wondering if those sample populations include enough women or ethnic minorities, who are statistically under-represented in clinical trials. Just knowledge about the self, the one person on this planet who you might actually have some control over.

Obviously, that kind of marketing works — it worked on me, at least. And it worked on the people who suggested I take the test. My Twitter pals were all really excited when I brought up taking the test, which I had learned about here. I admit, I got over-excited and a little careless. My thinking wasn’t critical enough. I didn’t do enough research. Had I known the FDA had issues with 23andMe, I would have kept my money. On the other hand, the FDA waited years to write a letter on the matter. They could have done that a little sooner if they were so terribly concerned. They didn’t have to wait until 23andMe started an aggressive marketing campaign. Risk is risk. If the FDA thought consumers were at risk from the test alone, why wait until the test became popular? Shouldn’t they have contained the threat when it was still small?

Then again, the risk might not be that great even now. As Xeni Jardin points out,

“I have always considered 23andme to be a provocative kind of experiment, and a source for questions for my doctors, or followup testing with my doctors– but 23andme is not the same as medical screening overseen by a doctor. I would not base decisions for surgery or chemo on the results of the 23andme spit kit alone, and I can’t imagine any sensible patient or doctor doing so. The service explicitly tells users not to make medical decisions based on test results, if I recall correctly.”

The test is something you take to your doctor to start a conversation, and maybe jump the queue for a mammogram or MRI. It’s not a permission slip for surgery, and any physician who lets you cut off your breasts just because the Internet said so is probably not worth the spit you hawked into the test kit.

None of that gets at why I took the test, though, and why the FDA’s fight with 23andMe or any other personal genomics firm is going to be an uphill battle. The Verge suggests that “in the future, companies might need to be more modest in their goals. They might steer clear of high-stakes tests like BRCA, which is so strongly linked to breast cancer that it often spurs preventative surgery, and is currently included in the 23andMe pack. Instead, companies could focus on genomics as a hobby or a deep dive for geneology buffs,” and that’s ludicrous. Here’s why.

I want to know if I should have children.

It’s really pretty basic, especially for a woman who turned 30 this year. I want to know exactly what I’d be passing down. Cancer runs in my family, and so do MS, heart disease, and Alzheimers. (Also, I’m five feet short, overweight, can’t tan, and have frizzy hair, oily skin, and narrow little piggy eyes, one of which is crinkles up smaller than the other when I smile. It’s not much of a legacy to leave behind. Kid, if you ever read this, I’m sorry. Switch to all-natural skincare products and thank me later.) This isn’t to say that I have some eugenical master plan for reproduction — my partner already wrote the book on that — but when you look at a cancer risk like Jolie’s (85% by Myriad Labs’ estimate), it’s hard not to wonder: am I poison?

But kids are only part of it: the other part is knowing that because of the difference in age between my partner and I, I’ll probably die alone. And I want to know what kind of death I should be preparing to have. Should I be investing in long-term care insurance? Should I write my will based on a presumption of non compos mentis? Can I afford to retire in a rural area far from major hospitals, or will I need frequent adjustments to my chemo portals, or regular trips to a dialysis clinic? If I remain child-free, either by choice or circumstance, these decisions will be mine and mine alone. And I deserve access to as much information as possible to help me make them. One grandmother died at 67. One grandfather died at 71. I should really be getting a jump on this.

I’m okay with dying early. I’m okay knowing I’ll probably get the same cancer that my mother, her sister, their grandmother, and their aunts all got. What I’m not okay with is being unprepared. There’s a reason all my pieces of luggage have flashlights and tampons and ibuprofen socked away inside. I like being ready. It’s a habit I learned from migraine headaches and power outages. And I was under the impression that 23andMe could help me get ready, even if all that meant was showing something to a doctor and saying: “Look. I’m not a hypochondriac. I have data. Let’s talk.”

So good luck, FDA. Good luck getting people to stop being curious. Good luck encouraging them to spend thousands of dollars on a test from a company that is fighting the Supreme Court to maintain patents on genes, instead. Really. Good luck with that. It’ll be an uphill battle, as I said.

Maybe you should have gotten a jump on things.