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Some Fear Insurance Denial Over Genes

By Lori Wiviott Tischler, M.D.
Content provided by the Faculty of the Harvard Medical School

Doctors believe that gene information may someday improve treatments. But some people are afraid to get genetic tests, the New York Times reported February 24. They are afraid that the results might be used against them by insurance companies. There is little evidence that this has occurred, the Times said. A bill in Congress would forbid companies to deny coverage or raise rates based on a person's genes. The House passed the bill last year. It is awaiting action in the Senate.

What Is the Doctor's Reaction?

The stars aligned at my house this past weekend and I got a chance to read this article from the Sunday New York Times. The article shares stories of several people who chose not to have genetic tests or not to report the results to their doctors. The reason? They were afraid that they could lose or not be able to obtain insurance.

Patients explained their fears about being tested for things that run in their families. The conditions included blood clots, breast cancer and lung disease.

Some decided to have radical surgery that might not have been necessary. Some paid for testing out of pocket. They did not tell their doctors when results showed a genetic risk of disease.

Many of the people in the article used genetic information to make decisions without a doctor's advice. They were not all bad decisions. A doctor's advice might have made a difference, though. In some cases, a doctor may have provided access to important studies and experimental drugs.

As doctors, we see huge potential in human genetics. Genetic information will help us treat patients with the most appropriate medicines, predict illness, and provide truly individual care. Yet, this will not work unless patients trust the system enough to allow testing. People need to be sure this most personal information will be handled privately — b etween patients and doctors.

The state where I live has several laws that ban discrimination in employment and lending on the basis of genetic tests. The state also forbids the cancellation or refusal to renew a medical policy on the basis of genetic information. In 2007, the U.S. House passed a national bill banning discrimination based on genes. It has not yet passed the Senate. Information about your own state can be found at

What Changes Can I Make Now?

Know your family medical history. These are the diseases and conditions that run in families, from arthritis to prostate cancer. Talk to your doctor about your family history.

If your doctor brings up genetic testing, be aware that it is not an emergency. Ask to see a genetic counselor. This counselor has training that can help you make the best decision for yourself. Make sure to learn (before testing):

  • What the test entails

  • What the results mean for you and your family

  • What the laws are in your home state about protection of this information

Your doctor may recommend genetic counseling before you conceive a baby. Some tests are recommended for all women who are planning a pregnancy. Others, such as tests for sickle cell anemia or Tay Sachs, are generally reserved for people at higher risk. If you are already pregnant, then time may be shorter for gathering this information.

If you paid out of pocket for testing or if you know about a genetic condition, I urge you to tell your doctor. Talk with him or her about how to best handle this knowledge. We can help, counsel and treat people best when we have full information.

What Can I Expect Looking to the Future?

During the next few years, we can expect more useful genetic tests. Some will be similar to what we have now. These tests help people assess their risk of certain diseases.

Other new tests will help doctors know if certain medicines will work for you, based on your body's genetic makeup. I think this has tremendous potential. It is exciting to think about truly tailored health care.

From the social and political standpoint, I hope that we see a clear message that it is not acceptable to discriminate against anyone based on genes. I think that the bill in Congress looks like an excellent beginning. If this issue is important to you and your family, I urge you to take the time to write, call or e-mail your senator about it.

Last Annual Review Date: 2008-02-26T00:00:00-07:00

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