Should you worry about genetic discrimination?

Sometimes, doctors may recommend to a patient to test for a specific gene for a particular disease that seems to be prevalent in that patient’s family.  For example, in hereditary breast cancer, two genes are commonly tested for breast cancer risk assessment.  They are two tumor suppressor genes named “BRCA1” and “BRCA2” that are involved with DNA repair.  Women with an altered BRCA1 and/or BRCA2 gene are up to eight times more likely to develop breast cancer than those without mutations in those genes.  Fortunately, there are treatments that would significantly decrease this risk.

However, despite the potential medical benefits, many patients are worried that genetic testing can result in discrimination.  Genetic discrimination is when one is treated unfairly because of differences in his/her DNA that increases the chance of getting a certain illness.  Patients worry about their genetic information affecting their health insurance and/or their employment.  Therefore, it is important to know some basic facts about the law:

1)  Established federal laws:  the Americans with Disabilities Act (ADA) and the Health Insurance Portability and Accountability Act (HIPAA).  HIPAA keeps genetic information confidential, prohibits the exclusion of an individual from group coverage due to genetic predisposition, prohibits charging a higher premium, and establishes that a predictive genetic status is not a pre-existing condition.

2)  New federal law:  the Genetic Information Nondiscrimination Act (GINA).  This was signed into law by President Bush in May 21, 2008.  GINA protects people from discrimination by health insurers and employers on the basis of DNA information.  This law prohibits the use of an individual’s genetic information on setting eligibility, premium or contribution amounts by group and individual health insurers, and forbids the health insurer from requesting or requiring an individual or family member to undergo a genetic test or requesting genetic information.  Similarly, employers may not use genetic information to make decisions in hiring, firing, job assignments and promotions.  However, it should be noted that GINA does not cover life insurance, disability insurance and long-term care insurance.

3)  State governments also have specific legal protection against genetic discrimination.  The degree of protection from these laws varies widely among the different states.  Federal laws set a minimum standard of protection that must be met in all states.  They do not weaken the additional protections provided by any state law.

Every one of us has several DNA differences that could increase or decrease the chance of getting a particular disease.  It's important to remember that these DNA differences don't always mean someone will inevitably develop a disease, just that the risk to get that disease may be greater.  As more genetic tests become available, and more preventive treatments discovered, these laws are extremely important to protect patients’ rights and allow patients to have access to optimal medical care with less worry about genetic discrimination.