Then I asked him to look at my Asian readout. Stefánsson didn’t know why the Asian readout was so sparse, so he called a colleague in Iceland. Now that’s customer service at its best. Very little is known about the risks in Asians, the colleague said over the phone. This, however, might change soon. Stefánsson is establishing research collaboration in Hong Kong, with the hope of expanding deCODEme to the Far East.

Can I trust what is there now? “There’s always a risk that information is wrong,” Stefánsson said. “It is at least as accurate as any medical tests are. We are the guys who discovered most of the genes. We are like fish in water. This is what we’ve been doing for more than a decade.”

Why find out about the risks of diseases when there is no cure? “If you don’t want to look at Alzheimer’s because you’re afraid that you would be unable to face the fact that you’re likely to lose the little God gave you, then you just don’t click on it,” Stefánsson said. Why should someone in her early twenties worry about old-people diseases? “Do you want to live a life of a youngster, with the illusion of immortality?” he asked. He answered my questions with questions. Stefánsson told me to think of the tests as an instrument to learn something about myself.


Stefánsson shared his own results with me. He’s at higher-than-average risk of developing prostate cancer, so he should probably check with a urologist on a regular basis. “I was a medical doctor for 25 years, and I don’t like doctors,” he told me. “I rarely go to see them. Most people I know who have died, have died fairly soon after seeing a doctor or have died in a hospital. I tell the people I care about to stay away from hospitals,” Stefánsson joked.

I left the hotel feeling pretty good about my genes for the most part. But my eyes throbbed the rest of the day. Perhaps I just needed to change my contacts. Where do you draw the line between knowing risks and believing you’ll get sick? The baggage of knowing my genetic outlook was taking its toll, momentarily tricking me into thinking my risk of macular degeneration was an actual medical diagnosis.

In addition to giving me varying reports about my potential risk of illness,? I found that each company had a totally different personality. Like overprotective parents, Navigenics told me only the risks they thought I should know. With enthusiasm their genetic counselors took care of me. Once the results are available, you have the option to call. Like a night out on the town with a popular clubbing buddy, 23andMe knew how to entertain me. Playing on its Web site was almost as much fun as surfing Facebook. I even made some friends along the way (including 23andMe director and investor Esther Dyson). By the time I used deCODEme, the tests’ novelty had worn off. Still, deCODE genetics was authoritative. My first impression came entirely from its CEO—idealistic, likable, and thoughtful.

The Critics
So what do the critics of these tests say? “If [the companies] say you have a certain gene variant, can you believe the results?” asks Muin J. Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention. Our understanding of how each gene, each cigarette, and the environment interact and how they contribute to disease is comparable to the state of computing in the 1980s. “Your family history reflects the shared environment and the sharing of many genes,” Khoury says. Family history is your best predictor, he argues.

Seeing my genetic risks displayed online seemed perfectly normal now—just as normal as checking my e-mail.

Alan E. Guttmacher, now acting director of the National Human Genome Research Institute at the National Institutes of Health, agrees with Khoury. “If you read the fine print carefully, these Web sites don’t usually make false claims, but I think a lot of people will have false hopes. The information is incomplete at best and, in some cases, very likely wrong,” Guttmacher says. “The results look scientific,” he adds, but don’t be fooled. “I would have been more surprised if the results were consistent.”

Both Khoury and Guttmacher have aired their concerns. Khoury, coauthor of a recent? paper on the subject published in The New England Journal of Medicine, clearly warns that this technology is not ready for prime time.

“The FDA isn’t currently regulating the tests,” says Gail Javitt, the law and policy director at the Genetics & Public Policy Center at Johns Hopkins University. “Even though they have the authority to, they’re not enforcing it.” Because the tests were made in-house by the labs, it’s up to the labs to maintain standards. “There’s a lack of oversight, but what’s more troubling is there’s no health-care intermediary,” Javitt says. “It might misinform customers about their risk, and they will go on to take actions that aren’t warranted.”

This story is a kind of consumer report on DNA testing. In 2006 the General Accounting Office (GAO) did its own report, focusing on the related field of nutrigenetic testing, in which companies test your DNA and then use that information to give you diet and lifestyle recommendations. But the GAO did not cover the broader range of DNA tests available directly to consumers. The GAO sent two people’s spit to different companies but made up 14 different profiles to pretend the samples represented fictitious people of various age groups, weights, and lifestyles. “The 14 results we received do contain predictions that a consumer may interpret as diagnoses,” the report read. “Even though all of the genetic information contained in the test results based on a single source should be identical, we received disparate results for a sample from the same source.”

Me
While the results were sometimes conflicting, the advice was basically the same: Stop smoking, lose weight, exercise more, and control blood pressure. Something tells me I should be doing all these things anyway.

I’m glad I took the tests. I went on a trip into my past, present, and future. It’s an experience that gave me a new perspective on life. For six months I visited uncharted genetic territory in a whole new world (unexplored by most people). To some, my DNA diary may seem like the confessions of a journalist discovering in the end that her genetic information didn’t lead to a diagnosis of any kind. But maybe it will help me someday, when I’m trying to piece together my medical mysteries.

For now, as I sit in my office with an iced coffee in hand and log on to Navigenics, I check out what I can do to prevent multiple conditions (as if it’s a luxury): Exercise. I run every day. Don’t smoke. Never have. Healthy diet. I think so. Healthy weight. I hope so. Vitamins. Um, I should start. Lower blood pressure. No clue what mine is. Lower cholesterol. Oh, man, I don’t know that either. Time to see my doctor. Avoid hormones. Can’t. Reduce stress. OK, after this story. Get enough sleep. Ditto. Avoid alcohol. I have, thanks to the DNA tests. Don’t wear high heels. What, really?

I click “sign out.” I try to forget about the risks and live life the best I can. Whatever my biological destiny is, at least I think I can change it a little.

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