Protecting your legal rights
Protections under GINA
A growing number of federal and state laws help you benefit from knowing your genetic information without putting your job or health insurance at risk.
The main law protecting you against genetic discrimination is GINA, the Genetic Information Nondiscrimination Act of 2008. GINA is a federal law that specifically prohibits genetic discrimination in health insurance and the workplace.
Under GINA, health insurers cannot use your genetic information to deny you health coverage or set the price you pay for health insurance. Insurers also cannot ask you or require you to take a genetic test. These rules cover health plans of all sizes, from group health insurance you may have through your employer to government-run insurance and individual health policies.
GINA also prohibits employers from using your genetic information to make hiring and salary decisions or set other job-related policies. Employers cannot require you to take a genetic test as part of starting or performing a job, except in very limited circumstances to protect worker safety.
GINA also has some noteworthy limits. GINA's protections do not apply to other types of health-related insurance, such as life insurance or long-term care coverage. In addition, GINA only safeguards genetic testing and genetic information. GINA does not apply to a person who has been clinically diagnosed with a genetic disease. Other federal protections, however, may apply in that situation.
Protections under HIPAA
HIPAA, the federal Health Insurance Portability and Accountability Act of 1996, covers genetic information with additional safeguards. HIPAA protects the privacy of your medical information. Upon GINA's passage, HIPAA was changed to specifically state that genetic information should be considered medical information and receive the same privacy protections.
HIPAA also specifies that genetic information without a current diagnosis of illness is not a pre-existing condition.
Protections under state laws
Your state also may have laws guarding against genetic discrimination. At least 47 states, for example, have passed legislation related to discrimination in health, life, disability or long-term care insurance.
These laws vary widely from state to state. A few states have specific protections for types of health-related insurance not covered by GINA.
Federal and military employees
An executive order from 2000 prohibits federal government agencies from obtaining genetic information about employees or job applicants. The order also prevents agencies from using genetic information in hiring and promotion decisions. This order, however, does not apply to the military. Nor does GINA. Recent reports state that the military sometimes denies medical benefits to some service members who have certain genetic conditions.
