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July 29, 2010 |
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| February 08, 2010 |
By: John Pacenti |
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im was social worker with a human services agency when she revealed at a staff workshop on caring for people with chronic illnesses that her family had a history of Huntington’s disease, an incurable genetic neuro-degenerative disorder. A week later, she was fired despite outstanding performance reviews.
In another case, a 28-year-old woman initially was denied health insurance coverage after the carrier learned she had a predisposition to breast cancer. She hadn’t revealed any genetic information but revealed she had undergone prophylactic mastectomies and a hysterectomy. The carrier learned about the operations after requesting her medical records.
These are two case studies mentioned in a 2004 report by the Coalition for Genetic Fairness in an argument for a law to protect Americans from health-related discrimination. The Genetics Information Non-Discrimination Act, or GINA for short, took effect in November. The late U.S. Sen. Edward Kennedy, D-Mass., called it “the first civil rights bill of the new century of the life sciences.”
GINA takes a two-pronged approach, restricting insurance companies from denying coverage based on genetic predisposition and outlawing discrimination against workers because of their health makeup.
Even though it took a decade for the legislation to pass Congress, GINA is very much a law of the times: spiraling health costs meet the future as genetic testing becomes more commonplace.
Attorney Frank Scruggs, a shareholder with Berger Singerman in Fort Lauderdale, said the response by insurers to advances in genetic research pushed Congress to insert itself into employer-employee relations.
“Some have called this the most significant employment law or civil rights law of the last few decades,” he said. “For all of us, there is broad sensitivity about ensuring the right to earn a living or get life-saving health care and not to be denied … from something they cannot control: their genetic makeup.”
Other management-side labor and employment attorneys say the law is not practical and could derail wellness programs.
Kevin Vance, a partner at Epstein Becker & Green in Miami, said the law has nuances that could leave a business open to lawsuits brought by workers who were dismissed for valid reasons. He said many employers are unaware of the new law.
“There are different ways employers arguably could violate this law without knowing they are doing so,” he said.
Employers need to know the caveats in the new regulations on health assessments. Employees can be asked about family health histories but only if there is no financial incentive for them to join a wellness program.
Of particular concern is managers who get information about an employee’s family health history without asking, Vance said.
“Employees tend to discuss, I think, pretty casually in the workplace the situations with their relatives,” he said. “The concern I have is that employers just don’t know about this law, and the broad definition of genetic information leaves open the possibility that employees will make discrimination claims under GINA if they get terminated.”
Miami employment attorney Donna Ballman doesn’t foresee a lot of litigation arising from GINA but she said the law may open the door to greater protections than people realize.
“For instance, weight is known to be a factor of genetics,” she said. “If someone has a family history of obesity, this may be one law that ultimately protects obese employees from discrimination.”
Jeremy Gruber, executive director of the New York-based Council for Responsible Genetics, said GINA significantly curtails workplace wellness programs that give economic incentives — usually money or a break on insurance premiums — to participants.
“Very few people are in an economic position to choose between the privacy of their health information and providing for their family,” he said.
Employers have turned to wellness programs to help cut down on sick days and skyrocketing insurance costs. Gruber said wellness programs are sometimes a means of getting private health information on employees. Such information could be crucial in curtailing costs and absenteeism even though someone with a history of heart disease in the family is not destined to develop cardiovascular problems.
Burlington Northern Sante Fe Railroad in Nebraska earlier this decade was caught conducting secret genetic tests on its workers who filed worker compensation claims.
The employees said they developed carpal tunnel syndrome from using heavy machinery. The railroad told the workers they had to undergo a physical examination or face termination. Later, it was learned the railroad conducted genetic testing to see if the workers had a predisposition to carpal tunnel syndrome.
“The intent was clear: to use genetic information in a discriminatory manner,” Gruber said.
Gary Avery, a Burlington Northern employee who made a carpal tunnel claim in 2000, is quoted in the report by the Coalition for Genetic Fairness as saying no health insurance company or employer has the right to know anybody’s genetic makeup.
“What happened to me should not happen to anyone, especially in the United States,” he said. “No one can help how they are put together.”
Without GINA, Gruber said genetic information could be used against job applicants. A company could refuse to hire someone with familial health risks based on the potential for higher health costs.
“GINA is a very much forward-looking law,” he said. “It’s hardly as pervasive as other forms of discrimination. GINA was meant to stop the practice of employers acquiring and using genetic information before it became as endemic as other forms of discrimination.”
John Pacenti can be reached at jpacenti@alm.com or at (305) 347-6638. |
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