Q: My doctor recommends that I get a genetic test for breast cancer. I know it will help me decide on therapy, but if I get the test and I’m positive, will it affect my health insurance?
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A: Your concern has been shared by many women with a significant family history of certain cancers. As these tests become more available and as medicine develops more genetic tests to predict (and hopefully treat) diseases, this concern will be shared by many.
A recent editorial in the New England Journal of Medicine by Kathy L. Hudson, Ph.D., deals with this issue. In looking at the current legal implications of genetic testing, she found that 35 states have laws against genetic discrimination in employment and 47 against genetic discrimination in health insurance. But the states’ approaches to these laws differ and there is no national legal consensus which allows me to answer your question. Moreover, states define genetic tests in different ways. Most genetic tests (like the BRAC test, which can survey the two BRCA genes for mutations that confer an increased risk for breast or ovarian cancer) are done by a blood test. Unfortunately some of the states’ laws exclude blood, chemical and routine laboratory tests from the definition of “a genetic test”.
The genetic fear factor (aside, of course, the concern that the test will be positive) comes down to the issue of whether your future health insurance rates will go up once the insurance company knows your test results or if you'll be denied insurance the next time you apply, especially if you apply on for an individual policy. One of the ways to get around this is to personally pay for the test and not bill it to your insurance company. However, if the result is put in your chart it becomes a recorded record which can be accessed by your present insurance company or by future carriers. They could then raise you premiums or deny insurance if they felt a positive test result made you an insurance risk. With this concern in mind, some of my patients have requested that I send their tests to the lab under abbreviations or completely different names. They pay for the test and then personally keep the results. This works if the test is negative. (But it could be argued that if the test is negative, the insurance company would be reassured.) On the other hand, if the test is positive in your case it should lead to intensive surveillance such as MRI and even surgery to help prevent future risk of breast and ovarian cancer. Your doctor will have to denote the indication for these procedures for medical and insurance reimbursement purposes. Lack of recorded test result information can also adversely affect your (and your children’s) future care if the information is not available to every treating physician.
Our current Congress understands this concern and that the problem of potential discrimination will grow as medical developments allow physicians to identify genetic changes that contribute to disease. This year Congress reintroduced The Genetic Nondiscrimination Act, which prohibits group and individual health insurers from using a person's genetic information when setting eligibility or premium or contribution amounts. It also prohibits them from requesting or requiring that a person undergo a genetic test and prohibits employers from using a person's genetic information to make employment decisions, such as hiring, firing, and job promotions. Finally, the Act prohibits employers from requesting, requiring, or purchasing genetic information about an individual employee or family member. As expected, the proposed Act does not satisfy all parties and various interest groups are working to try and change it – we will see what happens.
If you're thinking of getting a genetic test, talk to your doctor, check the laws in your state, and ask your insurance company if they will cover the test and whether the results could affect your future eligibility.
Dr. Reichman’s Bottom Line: I would hate to have the fear of discrimination stand in the way of your getting a test that could impact your future health. Check the laws in your state and talk to your doctor and, oh yes, your insurance company.
Dr. Judith Reichman, the TODAY show's medical contributor on women's health, has practiced obstetrics and gynecology for more than 20 years. You will find many answers to your questions in her latest book, "Slow Your Clock Down: The Complete Guide to a Healthy, Younger You," which is now available in paperback. It is published by William Morrow, a division of HarperCollins.
PLEASE NOTE: The information in this column should not be construed as providing specific medical advice, but rather to offer readers information to better understand their lives and health. It is not intended to provide an alternative to professional treatment or to replace the services of a physician.
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