Genetic Testing – A Setup for Discrimination?
Posted: Thursday, May 13, 2010
by Dr. Ron Blankstein
Chesapeake Nutraceuticals
It's hailed as "personalized medicine." It's genetic testing and the future is here.
Scientists look at it as the doorway to life-saving health care.
Most Americans are afraid it will be damning information that will rob them of insurance benefits and lead to economic disaster.
A Double-Edged Sword
But as enticing as the idea is, there's a dark side. Once you are diagnosed with a genetic predisposition for a particular disease, how do you protect that information? What if your employer or insurer finds out?
Technically you are protected by law. The Genetic Information Nondiscrimination Act (GINA) was signed into law on May 21, 2008. But there have been cases of discrimination. Employers are increasingly hard-pressed to cover rising health care costs and some look for ways to screen out the employees most likely to get sick.
One instance involved the Burlington Northern Santa Fe Railway. They were sued by the Equal Employment Opportunities Commission (EEOC) for secretly testing the blood of employees who had filed worker's compensation claims for carpal-tunnel syndrome. They were looking for a genetic cause for the symptoms. The case was settled out of court in 2002. (1)
Another instance involved Eddy Curry, who played center for the Chicago Bulls in 2005. When he refused a genetic test to see if he had a predisposition for a heart ailment, he was traded to the New York Knicks.
Curry's attorney, Alan Milstein, said, "Think about what's at stake hereas far as DNA testing, we're just at the beginning of that universe. Pretty soon, though, we'll know whether someone is predisposed to cancer, alcoholism, obesity, baldness and who knows what else. Hand that information to an employer," he added, "and imagine the implications. If the NBA were to get away with it, what about everyone else in this country looking for a job." (2)
The Genetic Underground
Many people who want to take advantage of genetic testing do so with their own money. Fearful of coming under scrutiny of insurers, they spend hundreds, even thousands on DNA testing. Then they swear their doctors to secrecy or don't confide the results to them at all.
Linda Vahdat, director of breast cancer research at New York-Presbyterian Hospital, estimates that 20% of her patients pay cash for DNA testing to avoid submitting insurance claims. Dr. Kenneth Offit, in the genetics service at Sloan-Kettering Cancer Center, says the same thing. He says that fear of discrimination is the number one reason people cancel their appointments. (3)
A woman who prefers to be known only as Mary has taken matters into her own hands. She had herself tested for hemochromatosis, a genetic condition in which the body retains too much iron. The usual treatment is to have a unit of blood removed twice a week. But since she isn't even telling her doctor her results, she is planning to become a frequent blood donor. (4)
Federal Law Versus Insurance Fears
The EEOC includes genetic testing as a "disability" in the Americans with Disabilities Act to provide protection against discrimination, but this interpretation has not been tested in the courts. President Clinton banned genetic discrimination in the federal workplace by executive order in 2000.
The law also prohibits insurers who provide group coverage for more than 50 people from denying an applicant because of a health factor or genetic information. However, the insurer can restrict benefits or charge higher premiums. (5)
Insurers often deny that they require testing or ask prospective customers about genetic tests. Mohit Ghose, spokesperson for America's Health Insurance Plans (who provide benefits for 200 million Americans) calls it "an anecdotal fear." But a study by the Georgetown University Health Policy Institute determined otherwise. In 7 out of 92 cases, underwriters said they would deny coverage or add restrictions and higher premiums due to genetic test results. (6)
Kathleen Sebelius, Secretary of the U.S. Department of Health and Human Services, summed it up well. She commented that we are at the intersection of science and civil rights, adding that protecting Americans by not letting insurers use genetic testing against them will constitute "one of the first major new civil rights of the new century." (7)
Time will tell how the science of genetics plays out.
Please consult your personal physician before making changes to your diet, exercise or supplement routine.
Sources:
- Harmon, Amy, "Insurance Fears Lead Many to Shun DNA Tests," New York Times, Feb 24, 2008
- Litke, Jim, "Curry's DNA fight with Bulls bigger than sports world," Associated Press, Sep 29, 2005
- Harmon, Amy, "Insurance Fears Lead Many to Shun DNA Tests," New York Times, Feb 24, 2008
- Harmon, Amy, "Insurance Fears Lead Many to Shun DNA Tests," New York Times, Feb 24, 2008
- Johnson, Alissa, "Plunging Into the Gene Pool," State Legislatures Magazine, March 2007
- Harmon, Amy, "Insurance Fears Lead Many to Shun DNA Tests," New York Times, Feb 24, 2008
- Terry, Sharon, "Genetic Testing and Molecular Biomarkers," liebertonline.com, Dec 2009, 13(6): 709-710
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Top-level comments on this article: (1 total)I agree with Kathleen Sibelius, Dr. Ron. Thank you for this article.Glad you enjoyed.
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