In two separate studies of genetic tests, researchers have found that people are not exactly desperate to be protected from information about their own bodies. Most people say they'll pay for genetic tests even if the predictions are sometimes wrong, and most people don’t seem to be traumatized even when they receive bad news...(Read the full text of "Heavy Doses of DNA Data, With Few Side Effects".)
Although they were offered sessions, at no cost, with genetic counselors who could interpret the results and allay their anxieties, only 10 percent of the people bothered to take advantage of the opportunity. They apparently didn't feel overwhelmed by the information, and it didn't seem to cause much rash behavior, either...
"The medical field has been paternalistic about these tests," says Peter J. Neumann, the lead author of the study, who is director of the Center for the Evaluation of Value and Risk in Health at Tufts Medical Center. "We've been saying that we shouldn't give people this information because it might be wrong or we might worry them or we can't do anything about it. But people tell us they want the information enough to pay for it."
I took a similar position in my PajamasMedia piece from July 2010, "Should You Be Allowed to Know What’s in Your DNA?"
One of the core principles of medical ethics is to respect and preserve patient autonomy. The FDA should not interfere with a patient's right to use personal DNA testing to learn medically important information about himself that could help him treat, mitigate, or prevent bad diseases. And ethically responsible physicians should support -- not thwart -- their patients who wish to benefit their lives in such fashion.
