U.S. military practices genetic discrimination in denying benefits

Testing discouraged

Military doctors now discourage their patients from getting potentially life-saving genetic tests, undermining their ability to provide top-notch care.

"If someone called me up with regard to genetic testing, I had to say, 'That might not be something you want to pursue,' " Nunes said. "That's very hard to say."

In her 26 years in the Air Force, Fries said she often dissuaded women from getting tested for the BRCA1 and BRCA2 mutations that dramatically increase their risk of developing breast cancer.

She recalled counseling a 22-year-old soldier whose father had just been diagnosed with Huntington's disease. The soldier had 50-50 odds of developing the disease.

A neurologist at Walter Reed Army Medical Center ordered a genetic test for Huntington's, and it turned up positive.

"He was discharged from the military on the basis of the Huntington's disease gene even though, at that level of gene expansion, there was expected to be another 25 years before he would display any symptoms," said Fries, now director of genetics and fetal medicine at Washington Hospital Center in Washington, D.C.

For many in the military, the best course is to simply refuse all genetic tests, even though they may be needed for an accurate diagnosis, she said.

Getting genetic tests through civilian channels is not an option because it would violate the uniform code of military justice.

"You could get court-martialed if it were revealed that you had sought medical treatment or testing outside the system," Nunes said.

Most soldiers have no idea about the genetic rule, much less have a reason to challenge it. For those who choose to fight, it can be arduous process.

No one contested the policy until Marine Gunnery Sgt. Jay Platt did in 1998.

Platt had lost an eye and a testicle to Von Hippel-Lindau syndrome before doctors told him he had a malignant tumor in his left kidney and four benign tumors on his brain. He knew his 15-year Marine career was over.

"If you want to go ahead and medically retire me, I'm not going to fight it," he told his doctors.

But the Marines refused. Instead, he was medically discharged without any benefits because his genetic disease was a preexisting condition.

A discharge have would cut Platt off from Tricare, which allows members to seek care from a large network of providers, just like a civilian HMO.