Over the weekend, the New York Times ran an interesting article discussing the current state of the art in home DNA testing, which folks apparently are turning to to avoid insurers from gaining access to the test results.
Victoria Grove wanted to find out if she was destined to develop the form of emphysema that ran in her family, but she did not want to ask her doctor for the DNA test that would tell her.
She worried that she might not be able to get health insurance, or even a job, if a genetic predisposition showed up in her medical records, especially since treatment for the condition, alpha-1 antitrypsin deficiency, could cost over $100,000 a year. Instead, Ms. Grove sought out a service that sent a test kit to her home and returned the results directly to her. [...]
Such discrimination appears to be rare; even proponents of federal legislation that would outlaw it can cite few examples of it. But thousands of people accustomed to a health insurance system in which known risks carry financial penalties are drawing their own conclusions about how a genetic predisposition to disease is likely to be regarded.
As a result, the ability to more effectively prevent and treat genetic disease is faltering even as the means to identify risks people are born with are improving.
“It’s pretty clear that the public is afraid of taking advantage of genetic testing,” said Dr. Francis S. Collins, director of the National Human Genome Research Institute at the National Institutes of Health. “If that continues, the future of medicine that we would all like to see happen stands the chance of being dead on arrival.”
You know, it would be nice if some rational thought could be given now to balancing the benefits of knowledge to fears of underwriters gone wild.
From the perspective of someone in the insurance industry, I have to admit feeling uncomfortable with the possibility of consumers being armed with more information than the underwriters, opening the door to a world where only the folks who are likely to need coverage sooner rather than later buy coverage, causing the insurance system to collapse under the burden of adverse selection.
But, from the perspective of someone who is being screwed over by a health insurer… a healthy dose of paranoia might not be unreasonable.
At least today, abuses on both sides of the table seem to be extremely rare, making this a perfect opportunity to start working out the logistics of how to make this work in a fair manner.