The Genetic Information Nondiscrimination Act, known as GINA, sailed through Congress earlier this month and was signed into law yesterday by President Bush. The law of the land now prohibits health insurance companies or employers from using information gleaned from your genes against you. If your doctor recommends a genetic test, you’ll be able to take it with less worry. GINA is a welcome step, and a long overdue one. But even assuming it’s effectively enforced, we’re at the beginning of a long and bumpy road.Consider one of the warning lights already flashing: the aggressive marketing of “direct-to-consumer” gene tests for scores of medical and nonmedical conditions. Unlike the tests ordered by a doctor, these at-home tests are often sold online. More than two dozen companies now offer to analyze your DNA if you’ll just send them some spit in a test tube and a wad of cash.
Some of these 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. And then there’s the trio of “personal genome” companies - 23andMe, Navigenics and DeCodeMe - that have been much in the news of late.
These recent entrants scan your entire genome for variants that supposedly predispose you to a range of conditions, from Alzheimer’s to arthritis to - get this - athletic performance. With fees in the four-figure range, the whole-genome companies are using celebrities and hip venues to hawk their wares. Navigenics recently opened a trendy storefront in SoHo; in January, 23andMe distributed 1,000 free kits to the global elite gathered at the World Economic Forum in Davos.
Upscale marketing notwithstanding, the recent consumer genetics gold rush has not enjoyed the best of press. Medical experts, bioethicists and science reporters - including some 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. And if the tests are technically accurate, it’s often unclear what they mean. For non-disease traits such as athleticism, the evidence for genetic links is sketchy at best.
Even when a correlation between a genetic variation and a disease is strong, in most cases having it doesn’t mean you’ll necessarily get the disease; its absence seldom means you’re home free. If your family history suggests 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.
Although GINA doesn’t tackle any of these problems, its anti-discrimination protections do cover DNA tests whether they’re conducted as part of medical care or on a retail basis. But the new law may have a downside as well as gaps: It may encourage people to sign up to spit, despite the widespread concerns about doing so.
If direct-to-consumer gene tests catch on, their harms may not be limited to individuals’ health or privacy. One social issue on the horizon is the fate of the genetic trove that’s being amassed. Google and other investors in the consumer genetics sector presumably see gold in them thar genes, but the people who pay thousands of dollars for the privilege of surrendering their DNA samples will have no claim. Who will control this genetic treasure, and who will profit from it?
Another issue is more subtle and perhaps more troubling. Will gene tests reinforce exaggerated ideas about the role of DNA in who we are as individuals and societies? Such qualms are shared by Francis Collins, director of the National Human Genome Research Institute. “I very much worry that all this emphasis on a ‘gene for this’ and ‘gene for that’ raises the risk that people will conclude that that’s the whole story,” he commented recently.
That kind of thinking could wind up encouraging the tendency to explain our health - and our social and health disparities - in terms of inherited biology, rather than our access to education, housing and health care. GINA notwithstanding, might that create new kinds of stigmatization and hierarchies, based on real or perceived genetic deficiencies or superiorities?
So while GINA is laudable, the challenges of the DNA age still loom large. To protect ourselves as patients, consumers and citizens, we will need better policy, effective oversight and a great deal of social and cultural wisdom.
Darnovsky is associate executive director of the Oakland-based Center for Genetics and Society (geneticsandsociety.org) and a contributor to the blog Biopolitical Times (biopoliticaltimes.org).