Access to information cuts both ways when it comes to health care

kevin | Decision Making | Sunday, February 24th, 2008

Many hold out hope that the salvation of the wildly-expensive and under-performing US Health Care “system” will be rescued by informed consumers armed with information about themselves, facilities, providers, potions, and treatment options. That may even be true. A piece in the New York Times called Insurance Fears Lead Many to Shun DNA Tests reminds that the availability of information cuts both ways.

The first, much-anticipated benefits of personalized medicine are being lost or diluted for many Americans who are too afraid that genetic information may be used against them to take advantage of its growing availability.

In some cases, doctors say, patients who could make more informed health care decisions if they learned whether they had inherited an elevated risk of diseases like breast and colon cancer refuse to do so because of the potentially dire economic consequences.

Others enter a kind of genetic underground, spending hundreds or thousands of dollars of their own money for DNA tests that an insurer would otherwise cover, so as to avoid scrutiny. Those who do find out they are likely or certain to develop a particular genetic condition often beg doctors not to mention it in their records.