23andMe’s feature called 23andWe allowed me to share this milk indigestion problem with them. On the lactose intolerance page, I took a survey about drinking milk and checked the option: “Yes, I’m pretty sure I am [lactose intolerant]. Milk shakes are my enemy.” The point? This information “could lead to major insights when combined with genetic information from the 23andMe database,” the Web site read. I wished for a moment that all this educational material had been available when I was taking genetics in high school. I clicked on the section “Genetics 101” and watched one of the animated videos: A banana has 11 pairs of chromosomes, one video said. The side dish of ancestry information enabled me to trace my maternal line back 35,000 years.
When it comes to pinning down your risk of more complex diseases, it’s a bit challenging for someone of mixed ethnicity. You have the option to pick only one ethnicity. So when I clicked on European, the results didn’t quite match up to what I saw when I clicked on Asian. My risk for type 2 diabetes and rheumatoid arthritis was both low and high, depending on which ethnicity I chose. So what happens when you’re both, like me? I printed out the discrepancies to ask the 23andMe founders in person.
After going to Navigenics in January, I went to 23andMe. I took a 10-minute cab ride to 23andMe’s office, enjoying the Silicon Valley scene: the smell of fresh air, suburban tree-lined streets, bikers in spandex on their way to work, and men in suits standing on street corners with laptop bags in hand. I entered 23andMe’s nondescript building and waited in the lobby, playing with the toys there: fingers flashing red lights, pins that say “I spat,” and stress balls on the coffee table. Sweaty employees jogged down the stairs in their gym clothes, returning from personal training sessions and making their way to a kitchen stocked full of snacks.
One of the cofounders of 23andMe, Linda Avey, told me the company wants to create the world’s largest database of DNA information. Glad I helped contribute to their plans for world (DNA) domination, I found myself thinking. What is halting progress is the lack of people involved in genetic studies, not the technology, Avey said. By translating thousands of scientific discoveries and interpreting what the discoveries mean to an individual, they hope to “break down the barriers between the general public and what is going on in academic science,” she explained.
The idea of starting 23andMe evolved out of cubicle chatter. Avey had thought about collecting people’s DNA when she was working at her former job. She’d sit around with coworkers and talk about how great it would be if “we had more genetic information on more people so that we could learn more about why people get a disease.” At this point Anne Wojcicki, cofounder of 23andMe, entered our conversation full of energy. Wojcicki’s interest began when she was working in the biotech investment field. “All this money goes into research, and very little comes out of it,” she said. “One of the biggest challenges is getting enough data.” Getting more data means more people will have to spit. Google has bought into this notion: So far, the company has invested $3.9 million in 23andMe and an undisclosed amount in Navigenics. (Google’s cofounder, Sergey Brin, is married to Wojcicki.)
Frustration over mounds of genetic information never making it out of genetic research cliques is understandable, but I had my own frustration to address. You get the best results if you are of European descent. I told the founders I was an Asian-European mix, and when I clicked on the different options on the Web site, I got conflicting results. I wanted to know why. “Research needs to go a significant step further,” Wojcicki admitted. “23andMe’s goal is to advance genetics research in this area. So 12 months from now, when you’re logging on to the site every day, we hope the data is more reflective of your [ethnic] background.”
Later that night in my hotel room, I logged on to my 23andMe account. I noticed a new addition to the FAQs; it was about mixed ethnic backgrounds. So I clicked on it: “Because genetic association studies are generally performed in populations of a particular ethnic background [European, Asian, African], we cannot know whether the associations will also apply to those of a mixed background.… Feel free to look at the different incidence estimates the 23andMe Odds Calculator provides for different ethnicities, but take the estimates with even more grains of salt than usual.”
Like any good medical consumer, I got a third opinion. DeCODE genetics is known for discovering genetic risk factors for type 2 diabetes, early-onset heart attack, and breast cancer, among others. For this unscientific reason alone, I decided to use the company’s test—named deCODEme—to validate the other two.
I bought the test for a dollar—the best dollar I’ve ever spent. Normally it costs $985. (I gave in to temptation and accepted the reporter’s discount.) A few days later, I received my “buccal DNA collector” in the mail. By popping this stick in and out of my mouth for two minutes, I collected cheek cells—certainly a nice change from spitting. I mailed my sample off to deCODE genetics’ in-house testing lab in Reykjavík, Iceland.
There’s something to be said for taking a test three times. Seeing my genetic risks displayed online seemed perfectly normal now—just as normal as checking my e-mail. When I received a message in my in-box telling me that my analysis was ready, I signed on to my deCODEme account to view my results. First I adjusted the settings to my sex and age and even checked an option to say please contact me if there’s a chance to participate in genetic research. I had to pick Asian or European—again, no dual ethnic function existed. Finally I explored the 29 diseases and traits available at my fingertips.
First I pretended to be fully Asian and saw that I was at risk of developing type 2 diabetes, colorectal cancer, and rheumatoid arthritis. Next I was a European female.This time I was at risk for age-related macular degeneration, atrial fibrillation, rheumatoid arthritis, and Crohn’s disease. Yikes.
The CEO of deCODE genetics, Kári Stefánsson, interpreted my results for me. It is not the norm to have the CEO look at your results. Usually you’d receive your results online, and it would largely be up to you to interpret them for yourself. Stefánsson is the famous gene hunter who spearheaded the effort that mapped 65 percent of Iceland’s genome. I printed out my two summary reports—the Asian and the European—for him to look at.
I walked from my office to meet Stefánsson in the lobby of his hotel in Manhattan. Dressed all in black, he intimidated me. It wasn’t because at 6 foot 5 he towered over me or that he made fun of my wimpy handshake. What intimidated me was his confidence. If there were such a thing as a preacher for genetic testing, Stefánsson would be converting a lot of people. But after talking to him for hours, I realized Stefánsson was a lighthearted, matter-of-fact, all-around amazing guy—someone you’d invite to a dinner party to guarantee interesting conversation.
“There’s a paradigm shift from intervention to preventive medicine as we speak,” he said. “It happened when people started to download information about diseases. This didn’t happen before. Doctors used to be omnipotent; no one ever questioned them.” Knowledge is power.
I asked him to read my genetic horoscope. He looked at the European results first.
“You’re at high risk for developing atrial fibrillation, so cut back on how much alcohol and coffee you drink,” he said, ever so calmly. A person with atrial fibrillation has irregular heartbeats that can cause blood clots and lead to strokes. “The biggest alarm here is the possibility of developing macular degeneration.” I know I’ve mentioned this before, but seriously, I’m at risk of going blind in, like, 35 years. And that worries me, since I can’t see crap without my glasses now.