23andMe and the Fight for Genetic Information

GeekMom Science


As a birthday present to myself, and as a way to face the inevitable health concerns that tend to arise with another ritual blowing out of the candles, I decided to explore 23andMe.

Named for the 23 pairs of chromosomes in a normal human cell and described as a “home genetic test maker,” 23andMe is a privately held personal genomics company backed by Google. For just $99 and your spit, it offers rapid genetic testing. The test results can provide participants with information about their ancestry, potential health risks, and genetic predisposition to things like coronary heart disease or breast cancer.

When 23andMe co-founder Anne Wojcicki started the company six years ago with her husband, Sergey Brin, one of the founders of Google, her idea was to allow participants to assess their health risks. And, according to Bloomberg, when her husband received his results, he learned he had a gene that would make him susceptible to Parkinson’s disease.

Woman Spitting
All images courtesy of 23andMe.

For me, as the carefree days of my 20s (and even 30s)  morph into the  health-conscious zealotry of my 40s, I am curious to know about the genetic cards I’ve been dealt. Information is power, and the more I know about myself and my genetic makeup, the better able I am to maintain my health. For example, I’m Irish. So I already know by the various skin cancers I’ve wrestled with over the years that I need to avoid the sun, not seek it. But what about other health issues I don’t already know about?

I also thought 23andMe would be a great experiment to do with my kids, to help them better understand the role our genes play in who we are. Think about the dinner conversations around male pattern baldness, Neanderthal percentages, lactose intolerance! For their sakes, it would be good to know if there are markers to inherited conditions that might affect them.

Not to mention, this all sounded pretty futuristic and cool.

So in late October I registered with 23andMe and awaited my saliva-collection kit. On November 12, I received confirmation that my spit had made it to their laboratories in, I assume, Mountain View, California, where the company is based.

Then on November 26, the  same day I learned they were starting to analyze my DNA, 23andMe made the news. The FDA had stepped in, ordering 23andMe.com to halt sales of its DNA analysis product.

The FDA’s complaint? It says 23andMe is currently operating “without marketing clearance or approval” from regulators. The FDA cites “the potential health consequences that could result from false positive or false negative assessments for high-risk indications. . .” For example, the FDA notes that if a 23andMe user receives a false positive for breast or ovarian cancer, it could “lead a patient to undergo prophylactic surgery, chemo prevention, intensive screening, or other morbidity-inducing actions.”

Physicians groups tend to support these arguments. And now there is even a class-action lawsuit filed against 23andMe.

Saliva Collection Kit SingleBut as a consumer, I don’t want the FDA denying me information that might be life-saving. Why can’t I be trusted to use the information 23andMe provides and work with my doctor to determine the best means of treatment or prevention? As the calendar shows with my birthday here again, I’m a big girl now, and I can handle the information.

Genetic testing has typically cost in the thousands of dollars and been out of the reach of everyday people. Companies like 23andMe make this information accessible to a broad audience. A recent Change.org petition seeks to discourage the FDA from banning companies like 23andMe that provide genetic testing and information.

I can’t help but agree with what 23andMe’s Anne Wojcicki said in a recent Fast Company article about her business: “Everyone’s going to die and everyone’s going to get sick at some point. But I do believe that there are choices you can make in life that will make you as healthy as possible.”

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3 thoughts on “23andMe and the Fight for Genetic Information

  1. Actually I would have to agree with the FDA on this one. How accurate are the 23andme tests? There are many people that are not as responsible as you and would potentially go a bit wacko and the results of the tests.

    I think it is prudent to put a hold on the tests until the accuracy can be verified/improved and until we know of a way to intelligently inform consumers about the results of tests.

    Such information can be useful, but for the medically related tests it really should be done in conjunction with your doctor for an overall health plan.

  2. My husband and I were tested earlier this year through 23andme. It was compelling enough that we bought several kits to give over the holidays. I don’t know if we’re in limbo or not with these (not cheap) presents. Unsettling.

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