Are genetic testing companies making us obsess about the stupid stuff, while we forget to test for what matters?
Spit parties, online social networking built around DNA similarities, catchy details about which celebrities you most resemble-what fun! These are just some of the things one of the major genetic testing companies, 23andMe, offers to anyone who can pay to play.And playfully paying we are. But there’s a catch: the information these companies offer can make people worry about the wrong things-or give them a false sense of security-without giving them the information they really need. A tiny increase in a person’s likelihood of developing a non-fatal disease can make them overly preoccupied about a negligible risk, when real harms might lurk in their spit-cup.For between $399 and $2,500, four prominent companies allow a person to purchase genetic data about their disease proclivities and personal traits. Big names including Google co-founder Sergey Brin (whose wife is a co-founder of 23andMe) have participated, as have numerous reporters and regular folks. With the cost of tests decreasing, even Main Street can join the fun.What the mainstream genetic testing companies do not do-for cost and ethical reasons-is test for the scarier, highly predictive genetic predispositions. This is the DNA data you actually need to know.To learn whether you have a significantly elevated risk of developing breast cancer, for example, you would likely go to your hospital, which would send your blood to a laboratory, neither of which offers you social networking, folders full of random fun facts, or other perks. The most important genetic tests make a lousy game.Companies like 23andMe, Navigenics, and DeCODEme have good reason to steer clear of the breast cancer test in particular. To start with, most medical professionals agree that it should always be accompanied by genetic counseling. If a woman carries the so-called BRCA1 or BRCA2 mutation (BRCA for “breast cancer”), her lifetime risk of developing breast cancer can be as high as 80 percent, and her risk of ovarian and uterine cancer also goes up. The fun-loving genetic profile purveyors recognize that they are ill-equipped to guide women through decisions about how to handle and act on this information.At a time when companies are making genetics gimmicky, we risk losing sight of which genetic data is actually useful. The more predictive tests, like those for breast cancer, and as of last year, prostate cancer, help people decide whether to get aggressive screenings and take precautionary measures. And while some of those measures are invasive, they can be lifesavers.Removing breasts is thought to bring breast cancer risk down to two percent, and removing ovaries can lower the risk of developing the disease by up to 50 percent. Men with a family history of prostate cancer and four or five DNA variants have a cancer risk ten times higher than men with no risk factors. These men will benefit from more intensive monitoring that could detect cancer at an earlier, treatable stage.Some people fear that health insurance companies might use genetic information against them by denying health coverage or raising premiums, and that employers could discriminate. But now that the Genetic Information Nondiscrimination Act (GINA) was signed into law in May, there is less reason for people to avoid the more telling tests. GINA makes genetic discrimination illegal.In fact, having your DNA scrutinized can be a wise financial decision. Most insurance companies will pay for a BRCA-positive woman to undergo yearly MRI screenings starting at age twenty-five, saving the woman thousands of dollars and allowing her to catch developments that a mammogram would miss. Insurance also covers breast removal and reconstruction for women with a mutation.It’s not that DNA testing should be taken lightly. Rather, it should be taken more seriously than your neighbor’s spit party. Testing for cancer is not easy on the emotions, especially for young people. Several academic studies have shown that women under 35 confront unique fears when they learn they carry a BRCA mutation.My own study showed that young women with elevated cancer risks often feel stressed about finding and sustaining relationships once they know they carry a mutation and are considering surgery. These women fret over the possibility of passing a genetic mutation on to their progeny and feel pressured to finish having children so they can remove their ovaries soon thereafter.It is lamentable that the best options for women with BRCA mutations may involve removing body parts. But preventive surgery is less disruptive than surgery after cancer has developed and spread.Remember this the next time you find yourself spitting into a cup at one of the trendy DNA parties sweeping the nation: there’s a big difference between genetic profiles and the kind of genetic information that can help people make decisions that could save their lives.
