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January 10, 2006
Washington, D.C.
In any workplace, genetic testing raises complex and troubling questions. But when the boss is the U.S. military and the employee wears a uniform, those dilemmas multiply. The law provides civilian workers some protections against certain uses of their genetic information, and Congress is considering comprehensive legislation on the privacy of genetic testing. But these safeguards don’t equally apply to military service members, who work in a unique environment.

The federal government may not request, require or use genetic information from civilian employees. The military, however, routinely considers genetic information from service members -- to make assignments, terminate or promote, and decide health care benefits. At minimum, the military uses genetic test results to keep enlisted individuals safe, avoiding harmful environments or jobs that could trigger disease or exacerbate a health condition. But some question whether the military sufficiently protects the genetic information of enlisted personnel—or adequately informs them how that information is used.

What is fair for America’s men and women in uniform? How can the armed forces strike the right balance between its needs and those of enlisted personnel? A panel of experts, before an audience of journalists, policy analysts, scientists, health care professionals and military service members, wrestled with these questions at Genes in Uniform: Don't Test, Don't Tell, a Genetics Perspectives on Policy (GenePOPS) seminar held January 10 at the Johns Hopkins University campus in Washington, D.C.

The Genetics and Public Policy Center, supported by The Pew Charitable Trusts at Johns Hopkins University, hosted the seminar. Panelists were Susannah Baruch, senior policy analyst at the Center; Dr. Mark Nunes, formerly a military physician and now a clinical and laboratory geneticist both at Children's Hospital in Columbus and at Ohio State University ; and Jay Platt, formerly a United States Marine Corps drill instructor and currently an author, coach and motivational speaker. Center director Kathy Hudson moderated the session. Representatives of the Department of Defense (DoD) declined invitations to participate.

Baruch kicked off the discussion by describing today’s laws on genetic discrimination. While varying and perhaps incomplete, she noted, key federal and state laws do aim to protect civilians. At the federal level, both the Health Insurance Portability and Accountability Act of 1996 (HIPPA) and the Americans with Disabilities Act of 1990 (ADA) address discrimination. HIPPA stipulates that health insurance group plans cannot refuse to insure people, or raise their premiums, because of their genetic information. Although ADA does not directly address genetic information, it does protect those with physical or mental impairments from discrimination. The Equal Employment Opportunity Commission, the federal agency responsible for employment law interpretation and enforcement, has stated that ADA protects people from genetic discrimination by employers, though this has not be tested in court, Baruch added.

New laws for civilians could emerge. Over the past decade, various legislators have repeatedly introduced legislation to close gaps (such as extending protections beyond group plans to individual insurance policies) in HIPPA. Those efforts continue. State laws, too, are evolving, Baruch said.

The legal landscape, and work environment, is different for the military. In the armed forces, genetic testing is an accepted reality, Dr. Nunes explained. Every service member must provide a DNA sample to be used, if necessary, to identify remains. These samples are kept in a national repository and can be used only if needed posthumously or if subpoenaed in a criminal proceeding. As part of standard medical evaluation, the military also routinely screens members for certain genetic conditions, to provide appropriate health care and duty assignments.

The armed services need special procedures because they face “unusual occupational health challenges,” Nunes acknowledged. Military personnel perform a vast range of jobs in diverse locales, from the ocean floor to upper atmosphere, in every kind of climate. Some genetic conditions increase disease risk when an affected person is exposed to particular stresses or environments. High altitudes and extreme exertion, for example, can trigger symptoms for people with sickle cell disorders. Certain malaria medications can cause red blood cells to rupture in persons with G6PD (Glucose 6-phosphate dehydrogenase) deficiency. By knowing who’s susceptible to such conditions, the military can prevent needless injury or disruption of duty.

The military identifies genetic conditions by gathering a person’s family history and, when necessary, testing his or her DNA. A positive test for a genetic disorder is noted on a service member’s dog tags and in medical records, which superiors consult before making assignments and promotions.

Depending on the branch of armed forces, persons with sickle cell, for example, may opt out of service, be excused from severe exertion, and kept from assignments involving high altitudes. They may wear special red sashes or armbands during basic training to alert drill instructors to their sensitivity to strenuous exercise. Hudson likened this to wearing a “scarlet letter.” As another example, individuals with G6PD deficiency are not assigned to locations that would require them to take malaria medications.

The military sometimes tests for other conditions. Nunes cited tests on an officer up for promotion to flag rank (general or admiral) who had a family history of Huntington’s disease, an invariably disabling and fatal degenerative neurological disorder. But genetic testing is incomplete, he said, noting that service members are not tested for Marfan’s syndrome, which can cause sudden death during exercise. Audience member Dr. Melissa Fries, an Air Force physician, suggested the services might also test systematically for cardiac channelopathies, which can have a similar effect.

Some DoD policies punish, as well as protect. When a service member develops symptoms of a disabling genetic condition, his or her military career may be finished. Platt told of being diagnosed with cancer after 15 years of service as “a Marine through and through.” He ultimately lost an eye and underwent several brain surgeries because of tumors caused by Von Hippel-Lindau syndrome, a genetic condition that produces multiple eye and nervous system cancers. The struggle against his illness, however, paled beside what he called one of the most difficult battles of his life: persuading the U.S. military to maintain his job or provide medical benefits to cover his treatment.

When diagnosed with cancer, Platt was dismissed from the Marine Corps, which declared him physically unfit to continue, though he remained strong enough to set mountain-climbing records and to swim from Alcatraz Island to San Francisco with his hands and feet tied. More distressing, he says, the Corps found him ineligible for military and veterans health care and for disability benefits because DoD defined his cancer, as it did all genetic conditions, as a pre-existing condition present when he joined up at age 17.

Although Von Hippel-Lindau is a familial cancer, Platt was the first known case in his family. Platt’s service took him to a number of foreign countries that required multiple vaccinations. These, he said, may have triggered his underlying susceptibility. Convinced that “service to my country had exacerbated my condition,” he says, he decided to fight for health care coverage. Rejecting a military lawyer, he hired a civilian. He also consulted genetic experts at the National Institutes of Health, across the street from the Bethesda Naval Medical Center, where he was being treated. (These included Hudson, then Assistant Director of the National Human Genome Research Institute.)

Ultimately, Platt prevailed. Not only did the Marine Corps reverse its decision, but DoD also established its current policy: genetic diseases that occur after eight years of service are not considered pre-existing conditions. Although Platt could not remain in the Marines, he did receive medical and disability benefits.

Is eight years of service an appropriate minimum to qualify for health care coverage of genetic conditions? Doubtful, Nunes described the case of a female pilot assigned to temporary desk duty because of pregnancy. She developed a blood clot, called deep vein thrombosis, in one leg. Testing revealed that she had Factor V Leiden polymorphism, a genetic condition that sharply raises the risk of life-threatening clots. The diagnosis disqualified her for flying, and a medical board judged her ineligible for disability benefits. Like Platt, she appealed their finding that the condition was a pre-existing condition. She argued that environmental factors, including pregnancy and long hours sitting at a desk, had contributed. Like Platt, her decision was reversed. However, she still received no benefits because she had only seven years of service.

Given such situations, the panelists agreed that the military should provide better health care coverage for diseases potentially triggered by service, even within the first eight years.

More broadly, Hudson emphasized that both Platt and the pilot had the persistence, and resourcefulness, to press their appeals. Not everyone shares such stamina and skill, however. How many enlisted men and women are quietly denied benefits for genetic problems that develop during service?

Other dilemmas loom, as well. Service members need counseling to grapple with disease diagnoses, particularly for genetic conditions that could affect their children. Although many service members receive some kind of counseling, it varies considerably and often occurs in “less than optimal” group settings, Nunes said.

In conclusion, participants agreed, the military needs to re-examine, and strengthen, the rights of enlisted men and women. Legislation pending in Congress may do this for civilian workers. But it will have no effect on America’s men and women in uniform. Debates over coverage remain.

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