The New York Times has an interesting article today regarding some patients’ reticence of obtaining genetic testing that may reveal severe illness for fear that they will be either subject to higher insurance premiums and/or job discrimination. Instead of discovering such a disease early and reporting any warning signs to their doctor for proper early treatment, many of these patients instead monitor their symptoms and only report the problem when it becomes absolutely necessary.
Many of these people are turning to services that send testing kits and results right to the person's home; such services avoid the necessity of a doctor who may report any known genetic disposition for illness to the person’s insurance carrier. Some patients are paying for genetic tests out of their own pocket, deciding to pay the expensive lab fees rather than have their insurance pay for it. If results are found pointing to a predisposition for a serious medical condition, these patients often plead, even beg, that their doctor not list these results on their medical charts.
Aside from potentially not being able to obtain insurance or have their insurance premiums increase, many of these people fear job discrimination. Although employers are prohibited from discriminating based on sex, an existing handicap, race and religion, there is no current law explicitly disallowing employers from screening out employees who may cause an increase in their already burgeoning insurance premiums. Previously, the Equal Employment Opportunity Commission and other employers have settled any such dispute in manners not requiring a legal opinion; as such, no precedent has yet been set. The House of Representatives has passed the Genetic Information Nondiscrimination Act, which would prevent any such practices, but this bill is currently awaiting approval in the Senate.
Even though employers may not ask questions about any genetic predisposition to disease, the mere fear of such discrimination is preventing people from obtaining testing that may save their life. The New York Times article discusses two specific cases in which the patient either refused to have the genetic test or had the genetic test done outside the knowledge of her doctor; in both cases, the patient’s family history suggested that these women were prone to very serious illness. However, since neither woman reported anything to their doctor, nothing was written in their file warning of the potential illness. One of these women was sent home as being told she merely had a cold when she actually was suffering from an alpha-1 antitrypsin deficiency; the other was prescribed medication that interacted with her condition to create blood clots. Another woman described in the article chose to have surgery to remove any potential problems, rather than have a genetic test that she feared would disqualify her from obtaining health insurance.
The fear of having genetic testing results used against them has many patients not fully cooperating with their doctors, leading to inaccurate and sometimes dangerous treatment. The fear of losing their insurance and/or being discriminated against in employment opportunities has many of these patients turning to less-than-conventional methods to ensure nobody finds out of even the potential that they may have some genetic predisposition to some serious illness. Until some legislation is passed and/or a court rules on such issues, it is unfortunate that these people will be afraid to turn to the people who can best help them.