Last month, a small tempest broke out when Walgreen's Pharmacy announced that it would begin selling over-the-counter DNA tests directly to customers -- no doctor needed. The tests, made by a company called Pathway Genomics, promised to scan customers' genomes for more than 70 possible disease risks. "Enjoy the piece of mind that knowledge brings," the company promised.
Alas, there was not much peace of mind at the Food and Drug Administration, which quickly jockeyed to squash the effort to give people direct access to their genomes. Ordinary citizens, the agency warned, "should not be making important medical and lifestyle decisions without first consulting a health care professional." Walgreen's soon had postponed the debut of the tests, but that didn't stop Henry Waxman from putting the notion of direct-to-consumer genetic tests on the docket for congressional investigation. The idea that people might learn something about their inner natures before their doctor's do, it seems, is a matter of national importance.
The controversy here rests on a single assumption: That the typical Walgreen's customer, and by proxy the typical American, isn't prepared to learn about their DNA. Unless a physician guides us, the argument goes, we can't handle the truth. We'll quit our jobs, we'll divorce our spouses, we'll panic. Without a doctor, we're told, information can be more than mystifying -- it can be downright dangerous.
In fact, the controversy surrounding over-the-counter DNA tests is just the latest example of a stubborn paternalistic streak in our healthcare system. It dates back to the founding documents of the American Medical Association, which in 1847 demanded that "a patient's obedience should be prompt and explicit. He should never permit his own crude opinions... to influence his attention."
A century later, we'd hardly moved forward. In the 1950s and 60s, it was routine for doctors to use a secret language, heavy on the Latin, around their patients, lest they overhear what was actually wrong with them. "Psychological" was replaced by "supratentorial," and they spoke of "mitotic bodies" instead of cancer. "Doctors used to write prescriptions in Latin to prevent a patient from understanding what they were taking," says Warner Slack, a physician at Harvard Medical School and a longtime advocate of patient empowerment. "The fear was that this information could be dangerous to the patient." Indeed, this behavior extended even to the operating table. In the early 1960s, a survey of cancer surgeons found that a staggering 90 percent said they wouldn't tell their patient if they had cancer.
Ancient history, you say? Well, consider the reaction in the late 1980s, when the notion of at-home tests for HIV first appeared. At the time, there was near universal opposition to making the tests available without a doctor. When the first test was submitted for approval in 1990, the FDA's blood products advisory committee summarily rejected the application citing the concern "whether a lay person can reliably and safely perform the test and interpret the results without benefit of medical advice and professional counseling." Sound familiar? Thankfully, by the time the issue came up again in 1996, the agency reversed course and approved the tests -- even though those same concerns were once again raised by medical groups.
In recent years, there's been some progress in curing medicine of its paternalistic bent; these days only the most hide-bound physician would argue that patients can't handle a diagnosis, and few would withhold a patient's medical records when they ask for them. But sharing information is not the same thing as giving individuals direct access to their own information, if they so choose. In many instances, the role of physicians as gatekeepers is baked into our healthcare system. Look no further than the rules around laboratory tests: In many states, regulations prohibit a lab from sending test results directly to a patient; as a result LabCorp, one of the country's biggest testing company, categorically refuses to send patients their test results directly even when the law allows it. The doctor must agree, first.
Designating physicians as gatekeepers for genetic information isn't just disempowering -- it's basically sticking healthcare in a time capsule for a decade or more, until physicians get up to speed. A 2001 study by the Institute of Medicine found that it takes an average of 17 years for new research to be incorporated into clinical practice. Some of this recalcitrance is understandable; nobody wants a physician to tilt their medical advice to and fro, based on the prevailing winds from the latest study. But the lag is ill-suited to a risk-revealing science like genetics. Seventeen years means a huge lost opportunity for giving people some incentive for taking preventive actions today that might minimize disease risks years from now.
This persistent paternalistic streak also reflects a lack of faith in the ever-more empowered patient, who is eagerly scouring the Internet for the latest research concerning their condition. Like it or not, patients are not going to stop trying to understand ourselves, and our health better. What our genomes might tell us is just one more piece of the puzzle.
And that underscores a profound lost opportunity on the part of the medical establishment: There's ample evidence that when individuals are given unfettered, direct access to their own medical information, and are encouraged to take a decision-making role in their healthcare, they tend to enjoy better health. Study after study has shown that when patients get involved in their treatment and care decisions, when they engage with their health risks and take early measures, they tend to have better outcomes and be happier with their care. This is evidence that should encourage patient empowerment, not second-guess it.
If the history of medical paternalism tells us anything, it's this: It's only a matter of time -- maybe a year or two, maybe five or six -- before individuals gain access to their genetic information, without the oversight of a physician. And then the question won't be whether or not we can handle the knowledge. The question will be whether or not we're doing anything with it.
Thomas Goetz is the author of the new book, The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine.
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