Fear of Discrimination May Prevent People From Taking Genetic Tests To Identify Risk of Developing Certain Diseases
The "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," the New York Times reports. Because of this fear, 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," according to the Times.
Physicians say that some patients refuse to take genetic tests that would help them make more informed decisions about their health care "because of the potentially dire economic consequences," the Times reports. Other patients "enter a kind of genetic underground, spending hundreds or thousands of dollars" out of pocket for DNA tests to "avoid scrutiny" from their insurers, and some "beg doctors" not to mention particular genetic conditions in their medical records, according to the Times.
Employers say that genetic discrimination already is prohibited by the Americans with Disabilities Act and laws that govern privacy of medical records. However, employee-rights advocates say nothing in existing laws "explicitly prevents employers" from trying to "screen out employees they know are more likely to get sick," according to the Times. In addition, a Georgetown University Health Policy Institute study found that in seven of 92 underwriting decisions, "insurance providers evaluating hypothetical applicants said they would deny coverage, charge more for premiums or exclude certain conditions from coverage based on genetic test results" the Times reports. Mohit Ghose, a spokesperson for America's Health Insurance Plans, said genetic discrimination is an "anecdotal fear" and the "industry is not interested in any way, shape or form in discriminating based on a genetic marker."
The Times reports that genetic "discrimination appears to be rare" and that "even proponents of federal legislation" (HR 493) that would prohibit such discrimination "can cite few examples of it." The legislation passed the House but has not reached the Senate floor. According to the Times, "Regardless of whether discrimination actually occurs, many health care professionals say the pervasive anxiety over it demands legislative action" (Harmon, New York Times, 2/24).
