The genes for breast and ovarian cancer are in my family. I learned this when my aunt, against her provider's advice, had the genetic testing done. From what I understand, if my OB-GYN finds out this gene is in my family and notes it in my records, I could risk losing insurance coverage if I ever change providers. My family history is atrocious on both sides as well. So what do I do with this information? I am only 25 years old. I'd like to get the tests and preventive care I need, but I don't want to lose coverage for the future.

Ann

The gathering and use of genetic information is one of the most hotly contested issues today in medicine, insurance and employment. Legislatures in most states, along with the federal government, are looking closely at the uses of predictive genetic information and how to regulate fairly this quickly expanding field. Physicians, employers and insurers are considering the use and value of genetic information. Many consumers are stuck in the middle, wondering which way to turn. Once again, the rate of technological advancement is outpacing our ability to comprehend all the ramifications of that technology.

A common question is this: Do I jeopardize my future insurability or employability by seeking information about myself that may uncover a health risk? This is a valid question. To a person with a predisposition to a certain disease based on genetic evidence, insurance is a valuable and crucial commodity. If a situation were to arise in which such a person was forced to change insurers, the insurance company may be disinclined to grant insurance to someone who might develop breast cancer or Hodgkin's disease. On the other hand, knowing may be preferable to not knowing, as early detection and treatment are so important for survivability.

There are, however, many points in your favor. First, you cannot lose your current insurance coverage just because you obtain predictive genetic information. Many people are under the mistaken impression that insurance companies cancel insurance when a person gets sick, and assume that the same would happen if the companies find out a person could get sick in the future. This is not true.

Second, federal law prohibits the use of genetic testing or information in employer-provided insurance. The law requires insurers to issue coverage to the whole employer group, regardless of health. As long as a person maintains continuous group coverage, he or she cannot be excluded from coverage, nor can specific conditions be excluded. Even when a person leaves the employer group, the law allows that person to obtain non-group (individual) insurance coverage on a guaranteed- issue basis.

Third, many state laws prohibit insurers from using either genetic tests or genetic information. Other laws state that a person cannot be penalized for a condition that does not yet exist. In other words, the presence of predictive genetic information cannot be taken into consideration if the person is asymptomatic. Some of these laws are merely an extra layer of protection because many insurance companies do not use genetic testing or information anyway.

To find out the status of genetic testing and predictive information in your state, you can check with the consumer affairs division of your state's insurance department. An easy way to find an insurance department on the Internet is to log on the website of the National Association of Insurance Commissioners (NAIC). Follow the link to "Insurance Regulators" on the home page, and choose the insurance department map. Click on your state, and you will be linked to your state's web site. You can also download a list of insurance department phone numbers through the NAIC site.

Because of all the protections in place and the importance of preventive care, it is better to know what might happen than not to know.