Studies Show When It Comes to Genetic Testing, Medical Paternalists Don't Know What They're Talking About
Medical paternalists (physicians and bioethicists) have long sought to deny access to genetic testing to consumers on the grounds that the "little people" are too ignorant to know what do with it and might be traumatized if they got bad news. New York Times reporter John Tierney has an excellent article detailing the results of two new studies which find that medical paternalists are wrong as usual:
When companies tried selling consumers the results of personal DNA tests, worried doctors and assorted health experts rushed to the public's rescue. What if the risk assessments were inaccurate or inconsistent? What if people misinterpreted the results and did something foolish? What if they were traumatized by learning they were at high risk for Alzheimer's or breast cancer or another disease?
The what-ifs prompted New York State to ban the direct sale of the tests to consumers. Members of Congress denounced the tests as "snake oil," and the Food and Drug Administration has recently threatened the companies with federal oversight. Members of a national advisory commission concluded that personal DNA testing needed to be carefully supervised by experts like themselves.
But now, thanks to new research, there's a less hypothetical question to consider: What if the would-be guardians of the public overestimated the demand for their supervisory services?
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.
"Up until now there's been lots of speculation and what I'd call fear-mongering about the impact of these tests, but now we have data," says Dr. Eric Topol, the senior author of a report published last week in The New England Journal of Medicine. "We saw no evidence of anxiety or distress induced by the tests."
He and colleagues at the Scripps Translational Science Institute followed more than 2,000 people who had a genomewide scan by the Navigenics company. After providing saliva, they were given estimates of their genetic risk for more than 20 different conditions, including obesity, diabetes, rheumatoid arthritis, several forms of cancer, multiple sclerosis and Alzheimer's. About six months after getting the test results, delivered in a 90-page report, the typical person's level of psychological anxiety was no higher than it had been before taking the test.
Another study asked if people wanted information even if the tests could perfectly predict their disease:
… in another study, published in Health Economics, researchers surveyed a representative sample of nearly 1,500 people and found most people willing to take a test even if didn't perfectly predict their risks for disease.
About 70 percent of the respondents were willing to take even an imperfect test for genetic risks of Alzheimer's, and more than three-quarters were willing to take such tests for arthritis, breast cancer and prostate cancer. Most people also said they'd be willing to spend money out of their own pocket for the test, typically somewhere between $300 and $600.
A minority of the respondents didn't want the tests even if they were free, and explained that they didn't want to live with the knowledge. But the rest attached much more value to the tests than have the experts who have been warning of the dangers.
"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."
Well yes. Tierney correctly concludes:
The paternalists argue that it's still unclear how to interpret some of these genetic tests — and it is, of course. But if you ban these tests, or effectively eliminate them for most people by imposing expensive and time-consuming restrictions, how does that help the public? When it comes to knowing their own genetic risks, most people seem to prefer imperfect knowledge to perfect ignorance.
For more on genetic testing see my article, "I'll Show You My Genome, Will You Show Me Yours?" and you can find my genotype scanning information here.
Tierney's whole article is well worth reading.
