The following is a guest blog entry by Marcy Darnovsky of the Center for Genetics and Society.
To read The Spitterati and Trickle-Down Genomics Part 2, click here.
Just before the world's financial system hit the skids, the New Yorker's Talk of the Town and the New York Times' Sunday Styles section both featured lengthy accounts of a celebrity "spit party," at which notables in cocktail attire ejected their saliva into test tubes. The chic gala, hosted by media moguls Barry Diller, Rupert Murdoch, and Harvey Weinstein, was the latest episode of a remarkable publicity push by 23andMe, the start-up biotech firm whose mission is "to be the world's trusted source of personal genetic information."
The Google-backed company launched its celebrity strategy this past January, when it distributed a thousand free spit kits at the elite World Economic Forum in Davos, Switzerland. But the genomes of the rich and famous were just the first step. Early this fall, 23andMe announced that it's slashing its prices to Christmas-stocking levels, in a bid to make DNA tests this year's high-tech must-have.
This is shrewd promotion. Though the spreading economic gloom may put a ding in sales of $399 spit kits, 23andMe remains on a media roll. The company has been attracting gobs (so to speak) of fawning attention for months, and Time just put it at the top of a list of the "50 best innovations" of 2008. Its habit of inviting key reporters to its fancy parties, and throwing in free kits along with the glamour and glitz, hasn't hurt a bit.
The celebrity coverage and top-of-the-list triumph constitute a fanfare introduction to the new direct-to-consumer personal genomics industry. They also serve to deflect attention from the array of criticisms and concerns about the new gene tests that have been voiced by medical experts, public interest groups, and policy makers.
23andMe is just one—though by far the most publicized—of the couple dozen companies that now offer to analyze your DNA if you'll just send them some spit and a wad of cash. Some of the companies promise information about your risk of specific serious conditions such as multiple sclerosis. Others offer tests for "hair loss" or "addiction," or claim to reveal the optimum foods for your genetic profile. Several, including 23andMe, scan your entire genome for variants that supposedly predispose you to a range of conditions, from Alzheimer's to arthritis to athletic performance.
Even observers who typically greet DNA claims with unquestioning enthusiasm have raised serious concerns about whether direct-to-consumer gene tests are ready for prime time. First of all, they point out, we know little about the accuracy of these tests because they're so inadequately regulated.
Secondly, when the tests are technically accurate—that is, when they identify the genetic sequences they say they do—it's often unclear what they mean. Especially for non-disease traits such as athleticism, the evidence for genetic links is sketchy at best.
And even when a correlation between a genetic variation and a condition is well characterized, having it doesn't mean you'll necessarily get the disease in question. It may increase your odds, but that doesn't tell you when, how seriously, or what to do about it.
So if your family history suggests that a gene test might be meaningful, you're far better off taking it in the context of a doctor's care and a genetic counselor's advice. Otherwise, you may find yourself facing weighty medical or life decisions on the basis of preliminary and possibly spurious consumer gene test results.
These realities, along with the practices and marketing claims of the personal genomics companies, prompted the health departments of California and New York to intervene. In June, they sent "cease and desist" letters to several companies, basically telling them to stop practicing medicine without a license. But the California regulators have since backed down.
Marcy Darnovsky is the associate executive director of the Oakland, CA-based Center for Genetics and Society and a contributor to the blog Biopolitical Times.