This is just a hoot! TIME magazine has released its guide to 50 Best Inventions of 2008, and the numero uno on the list, The Retail DNA Test, is not even an invention. Based on old technology, called SNP genotyping, retail DNA testing (also known as direct-to-consumer (DTC) genetic testing) is a growing industry with services that many consider to be of questionable value. Don’t take our word for it: we are just doctors who blog in pajamas. Take note instead from the Genetics and Public Policy Center at Johns Hopkins University, which has just received a two-year NIH grant to study the industry:
Right now, [Gail Javitt, a principal investigator at the Genetics and Public Policy Center] explains, we know very little about the DTC landscape or how it will affect health and health care in the future. Genetic tests for more than 1,300 diseases or conditions are available clinically, and the number is growing rapidly. Theoretically, almost any genetic test for these diseases could be offered directly to consumers, and more than 30 companies already have entered the DTC genetic testing market, including major players Navigenics, 23andme, and deCODE…
“There is a lot of hype and a lot of angst about how personal genome testing will play out in health care,” Javitt noted. “What’s missing are hard facts about this industry and its consumers, and what the public’s motivations for, and experiences with, these tests have been.”
And if you read TIME magazine’s stupendous award announcement, you will notice that the editors are not even sure themselves:
California and New York tried to block the tests on the grounds that they were not properly licensed, but have so far been unsuccessful. Others worry about how sharing one’s genetic data might affect close relatives who would prefer not to let a family history of schizophrenia or Lou Gehrig’s disease become public. And what if a potential mate demands to see your genome before getting serious? Such hypotheticals are endless. And some researchers argue that the tests are flawed. "The uncertainty is too great," says Dr. Muin Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention, who argues that it is wrong to charge people for access to such preliminary and incomplete data. Many diseases stem from several different genes and are triggered by environmental factors. Since less than a tenth of our 20,000 genes have been correlated with any condition, it’s impossible to nail down exactly what component is genetic. "A little knowledge is a dangerous thing," says Dr. Alan Guttmacher of the National Institutes of Health.
So what to make of the award announcement? We say, TIME was probably sucking up to people whose lives have become a never ending effort to hype things onto the common man. You see, whether you take 23andme’s Anne Wojcicki and her husband Sergei Brin (co-founder of a website Google.com, an advertising agency with no customer service), or 23andme’s investor movie mogul Harvey Weinstein, or Navigenic’s venture capitalist John Doerr, they feel that they are changing the world. But really, considering the hype, aren’t they more interested in making money and elevating themselves to the level of revolutionaries, than furthering medicine and its technology? Doing a genetic test is not like listening to an iPod, or watching Pulp Fiction. Has Weinstein ever heard of false positive medical results? How about that every test always has such results? And what about cost-benefit analysis, so important in medicine? Do you really believe that Wojcicki can explain why we do mammograms every year, but not chest X-rays? After all both can detect cancer…
We say these VIPs have all the right to run their enterprises, but to say that what they offer is an important service and revolutionary service would be far off the mark. TIME can do it, but our modest team of medical tech enthusiasts just can’t.
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