Genetic Discrimination: How Real is the Risk?
“Genetic discrimination” refers to someone using information that you may be genetically predisposed to an illness to refuse to insure you, to charge you higher insurance rates, or to end your medical insurance coverage.
Studies have shown that, although there have been great concerns about genetic discrimination, there have been very few cases of it.
In the overwhelming majority of cases, health insurers focus on current health risks, not likelihood of future disease.
What legislation protects the public from genetic discrimination?
Legislation enacted at the federal level as well as in many states, including Colorado, protects the public from genetic discrimination.
The Health Insurance Portability and Accountability Act (also known as HIPAA) is the law that protects privacy of medical records. Most people want their health care providers to have their complete health history so that they can make informed treatment decisions. HIPAA protects the privacy of this information.
In 2008, the U.S. House and Senate also passed the Genetic Information Non-Discrimination Act of 2003 (S.1053), also referred to as "GINA." The purpose of the law is to amend the Public Health Service Act to prohibit health discrimination against individuals and their family members on the basis of genetic information.
Protections regarding health insurance took effect on May 21, 2009. Protections for employment took effect on November 21, 2009.
- Prohibits insurers from cancelling, denying, refusing to renew, or changing the terms or premiums of coverage based on genetic information
- Prohibits employers from making hiring, firing, promotion, and other employment-related decisions based on genetic factors
(Note that this protection does not include life or disability insurance)
Colorado law (S.B. 94-058) protects privacy of genetic testing information. The Colorado law states that health insurance, group disability insurance and long term care insurance cannot be denied based on genetic information.
What about illness v. risk of illness?
If a person already has a serious illness (such as cancer), they may be put in a higher risk group by the insurer. Individuals’ or companies’ premiums may also rise because expensive treatment is likely to be needed.
Testing healthy people for a genetic change is different, because identifying change in a gene (also known as a mutation) may indicate a future risk of disease. The legal definition of genetic discrimination applies only to the person who does not already have a serious illness.
What about risks to relatives?
Some people are concerned that their test results could impact their children's or other relative's ability to get health insurance.
But your medical records cannot be used in determining insurance eligibility for another person. The records, in fact, cannot be released to anyone not involved in your personal health care without your written permission.