Privacy & Healthcare
One of the dirty little secrets of bad privacy law is that it kills. People who are not comfortable with the privacy of their medical care may avoid getting needed care. That’s why privacy features in the Hippocratic oath. But few people want to study this issue, and studying it is hard–people are likely to lie about their behavior. So when I find examples, I want to post them. This one is an incidental mention from the Economist a year or so back, which I pulled from the magazine and lost on my desk until now:
In the short term, the case for strong privacy laws seems clear. Francis Collins, an official at America’s National Institutes of Health who led the American arm of the Human Genome Project, argues strongly for GINA. He claims that many people with genes worth studying are avoiding research projects for fear of facing genetic discrimination later in life. Never mind altruism, says Dr Cook-Deegan, many people are even avoiding genetic screening that could save their own lives.
The problem arises when one looks to the medium term. If genetic information is kept secret from insurers, but individuals have the freedom to add or drop insurance coverage, then problems of adverse selection may arise. People will be tempted to “game” the system. Those who test negative for a serious and costly disease may drop coverage, while those who test positive may add or increase coverage. Insurers worry this will lead to a collapse of their risk pools, and ultimately to financial ruin.
(“Do Not Ask or Do Not Answer?,” Economist print edition. Oddly, the printed page, which I saved, has this as August 25, 2007, under a different title than the Economist’s web archive.)