Studies have found that fear of genetic discrimination is one of the main barriers preventing people concerned about their family history from seeking genetic services. As we discussed in the last issue of the newsletter, genetic information has unique characteristics that makes it different from other medical information. However, laws are beginning to be enacted at both the state and federal levels to address concerns about the misuse of genetic information.

One of the first steps came in 1997 when the Health Insurance Portability and Accountability Act (HIPAA) became law. HIPAA prevents group health insurance from denying coverage to new members because of a preexisting medical condition. The goal of HIPAA is to help people change jobs without fear of losing their health insurance because of past medical problems.

HIPAA specifically states that predictive genetic information, including information from genetic testing or family history, cannot be considered a preexisting condition unless the person has actually developed the disease. Thus, a person who is found to have a genetic alteration in an HNPCC gene cannot be denied insurance coverage if they have not developed cancer.

However, this law only applies to group health insurance plans. Group plans apply to people, such as employees of a company or members of a professional union who are insured together. People who are currently uninsured or who are have health insurance through an individual health insurance policy are not protected by HIPAA.

To continue being protected by HIPAA, it is also important to avoid gaps in insurance coverage. Being uninusured for more than 60 days will reduce the benefits provided by HIPAA. For people who are going to be in-between jobs, your employer may continue your coverage for 18 to 36 months through a program called COBRA, if you pay the premiums. Insurance provided by Medicare and Medicaid also counts as continuing health insurance coverage. As long a person is insured by a group plan, his or her preexisting medical conditions will be covered by HIPAA.

At this time, HIPAA is the only federal law that has been passed regarding the use of genetic information by health insurance companies. However, as of 1998, 38 states had passed at least one law regarding genetic information. Each of these laws offers a different amount of protection and defines genetic information differently. For example, Texas laws only protect against the use of information from genetic tests, while other states have a broader definition of genetic information and protect against the use of family history information. Understanding the laws involving the use of genetic information will help you understand your rights and ensure that you have access to the services you need.

These are some steps that you can take to learn how these laws apply to you:
1. Find out what type of health insurance you currently have and review your health insurance policy. You may want to contact the Human Resources or Benefits Department of your employer to ask about your right to continuation of coverage.

2. Learn about you own state's laws regarding the use of genetic information. You can contact your local state representative for information.

Helpful Resources:

http://data.georgetown.edu/research/ihcrp/hippa
This Website contains information about the HIPPA law and other state laws.

http://www.nci.hig.gov/legis/
This is the National Cancer Institutes Website for legislation related to cancer.

http://www.tcdc.mdacc.tmc.edu/
Cancer and the Law

For information about COBRA, contact the U.S. Department of Labor at 214-767-6831