Can you imagine being faced with the difficult decision of having your breasts removed – not because you have breast cancer, but because you’ve determined that you carry the genes for it? Women at risk for the disease can now find out whether they have the same DNA that killed their mothers and grandmothers.
In recent years, advances in genetic research have helped push medicine into realms once reserved for science fiction.
In the 1850s there were only 140 categories of disease, differentiated by their symptoms. By 1993, genetic mapping had allowed scientists to distinguish 12,000 categories of disease, to determine that some diseases were linked genetically despite having widely different symptoms, and to find better drugs and measures to treat or prevent these diseases.
Since then, some Americans have decided to examine their own DNA to hunt for the mutations that might lead to disease. Not all diseases have been genetically mapped, but there are currently genetic tests for more than 1,000 of them.
Many people fear what a genetic test will reveal and wonder whether it is wise to open up that can of worms.
Others have more practical concerns:
- The cost of a genetic test can run from $200 to $3000.
- If you have insurance and it covers the test, then your insurer will be able to access the results. Given how inclined insurers are to deny coverage to those with pre-existing conditions, many Americans have not wanted to risk being dropped from coverage for possible future-existing conditions.
- And if your boss provides your insurance, what if he or she finds out that the genetic test your doctor ordered and the company health plan paid for revealed that you’re likely to develop cancer? Will you lose that promotion, or even your job? (WhatIf blogged on this issue last fall.)
Well, now Americans need no longer fear that their genetic information will be used against them.
On May 22, President Bush signed legislation that had passed by a landslide in both chambers of Congress, despite opposition from the U.S. Chamber of Commerce and other business groups citing a likely rise in frivolous lawsuits against employers.
The Genetic Information Nondiscrimination Act now protects Americans in the following ways:
- Insurers cannot cancel, deny, or change coverage, or charge higher premiums based solely on a patient’s genetic predisposition toward a disease.
- Employers cannot use an employee’s genetic information in the process of hiring, firing or promotions.
This is definitely great news. Some are even calling it the first major civil rights act of the 21st century.
Not to end on a down note, but it is worth pointing out a blog post on this issue by a former health insurance professional and now regular commentator on health care policy. He points out that it took 18 years to pass this legislation even though the insurance industry didn’t oppose it, which he fears doesn’t bode well for future health care reform.
What do you think? Is this law a sign of more good things to come or just a blip in this country’s century-long struggle for health reform?
I fear that the legislation merely gives employees the “right” to sue if they think they’ve been fired or denied an earned raise or promotion because of their genetic profile. They would then have to prove the discrimination, something almost impossible to imagine.