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Now that researchers finally have mapped the human "genome," the genetic makeup of a human being, some consumers are feeling a great deal of anxiety. According to scientists, it eventually will be possible to identify years in advance who will get sick and who will stay healthy. Consumers are worried they could be denied health insurance, life insurance, or jobs because their genes indicate they are prone to illnesses.
Consumers have more protection than they realize against health insurers using genetic information to deny, terminate, refuse to renew, or adjust policies based on that information, according to Alissa Johnson of the National Conference of State Legislatures.
“Laws in 34 states strictly prohibit the use of genetic information for risk selection and risk classification purposes,” Johnson says. “Additionally, Arizona, Vermont, and West Virginia require actuarial justification for the use of genetic information. Texas bans use of genetic information in group health plans, and Alabama prohibits discrimination based upon predisposition to cancer.”
A patchwork of federal and state laws governs discrimination based on genetic information for health insurance. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) became the first federal law to directly address genetic information. HIPAA specifically prohibits health insurance discrimination based on any "health status-related factor," including genetic information, but for group health plans only. HIPAA applies to both fully insured health insurance plans (those regulated by states) and self-insured health insurance plans (those regulated by the federal government).
Texas Congressman Sam Johnson, chairman of the House Education and the Workforce Subcommittee on Employer-Employee Relations, says there are legitimate concerns about how insurance companies might use genetic information. “Researchers at the National Institutes of Health (NIH) announced that they had successfully completed a ‘rough map’ of the human genome. This made possible a whole new universe of scientific discovery -- one that will contribute to the prevention and cure of human disease,” says Johnson. “The announcement also spurred a public policy debate about genetic information and what specific protections should be accorded to this new information.”
While states and the federal government are taking steps to protect consumers from unfair use of their genetic information by insurance companies, The Genetic Alliance worries the level of protection won’t keep pace with the technology. Sharon Terry, president of the Genetic Alliance’s board of directors, says that’s why her group is forming “Action Teams” to address this issue and mobilize lobbying efforts. “These teams are comprised of lay advocacy leaders, clinicians, researchers and policy makers and will work together through email discussions and other activities as the issues and events evolve,” Terry says.
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