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U.S. military practices genetic discrimination in denying benefits

August 18, 2007|Karen Kaplan | Times Staff Writer

Eric Miller's career as an Army Ranger wasn't ended by a battlefield wound, but his DNA.

Lurking in his genes was a mutation that made him vulnerable to uncontrolled tumor growth. After suffering back pain during a tour in Afghanistan, he underwent three surgeries to remove tumors from his brain and spine that left him with numbness throughout the left side of his body.

So began his journey into a dreaded scenario of the genetic age.

Because he was born with the mutation, the Army argued it bore no responsibility for his illness and medically discharged him in 2005 without the disability benefits or health insurance he needed to fight his disease.

"The Army didn't give me anything," said Miller, 28, a seven-year veteran who is training to join the Tennessee Highway Patrol.

While genetic discrimination is banned in most cases throughout the country, it is alive and well in the U.S. military.

For more than 20 years, the armed forces have held a policy that specifically denies disability benefits to servicemen and women with congenital or hereditary conditions. The practice would be illegal in almost any other workplace.

There is one exception, instituted in 1999, that grants benefits to personnel who have served eight years.

"You could be in the military and be a six-pack-a-day smoker, and if you come down with emphysema, 'That's OK. We've got you covered,' " said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University. "But if you happen to have a disease where there is an identified genetic contribution, you are screwed."

Representatives from the Pentagon declined multiple requests to discuss the policy.

A high cost

The regulation appears to have stemmed from an effort to protect the armed services from becoming a magnet for people who knew they would come down with costly genetic illnesses, according to Dr. Mark Nunes, who headed the Air Force Genetics Center's DNA diagnostic laboratory at Keesler Air Force Base in Mississippi.

The threat is almost certainly small. A 1999 military analysis estimated that about 250 service members are discharged each year for health problems involving a genetic component. Disability payments for them would amount to $1.7 million the first year and rise each year after that as more veterans join the rolls. Healthcare expenditures would have added to the tab.

"Maybe they didn't want to foot the bill for my disability," said Miller, whose rare genetic disease is called Von Hippel-Lindau syndrome. "It's saving money for them. I'm just one less soldier that they have to dish out compensation to."

But the cost for individuals medically discharged can be high. While some eventually receive benefits from Veterans Affairs or private insurers, the policy leaves Miller and others scrambling to find treatment for complex medical conditions at the same time they are reestablishing their lives as civilians without having the benefit of Tricare, the military's health insurance.

"It seems particularly draconian to say, 'Well, you're out with no benefits,' whereas another person with the same injury gets the coverage simply because we don't know there's a gene in there that's causing this," said Alex Capron, a professor who studies healthcare law, policy and ethics at USC.

The fear of genetic discrimination coincides with early efforts to decode the human genome more than 25 years ago.

It took no great insight to realize that a complete inventory of life's building blocks would not only revolutionize the practice of medicine, but also mark individuals whose genes put them at risk for myriad diseases.

Congress took action in 1996, banning genetic discrimination in group health plans, and in 2000, President Clinton signed an executive order forbidding the practice against the federal government's nearly 2 million civilian employees. Similar laws against genetic discrimination swept through 31 states.

Congress is working to extend the federal law with the Genetic Information Nondiscrimination Act, which would protect people with individual medical policies. The act has passed the House and awaits a vote in the Senate.

Even if it becomes law, it will not apply to military personnel.

The Defense Department's original policy did not consider genetics when determining whether a soldier deserved medical retirement, assuming that any disease discovered during service had been incurred in the line of duty.

There was little reason to consider genetic mutations, since few were known. But by 1986, as scientists associated more sections of DNA with particular diseases, the military declared that it was not responsible for soldiers with "congenital and hereditary" conditions.

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