By Simeon Margolis, M.D., Ph.D. Provided by: Johns Hopkins University

Behind the Headlines

Genetic Testing Do's and Don'ts Posted Tue, Jun 24, 2008, 6:42 pm PDT

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Up until now, many people have been afraid to submit to genetic testing for fear that abnormal results might adversely affect their health insurance premiums or place their jobs at risk.

These same fears have also kept as many as a third of people otherwise willing to participate in genetic research studies from enrolling in them. This attitude is unfortunate because the results of genetic tests could provide us and our families with answers to some of our health-related questions.

Now, however, Congress has just passed the Genetic Information Nondiscrimination ACT (GINA), which prevents health insurers from using genetic test results to deny coverage or raise rates. GINA also bars employers not only from using such information when hiring or firing employees but also from determining job placement. And insurers and employers may not require individuals to submit to such genetic tests.

Final passage of such a bill has been delayed for many years by business groups and legislators who feared that it would lead to a rash of lawsuits against employers.

It's worth noting, though, a few policy areas where GINA is less consumer-friendly. This law, for example, does not explicitly prohibit life-insurance or disability-insurance companies from using genetic information when determining benefits for those who have a genetic abnormality that might later limit their ability to work. The bill also does not cover members of the U.S. armed services.

Most of these genetic tests — which can now detect more than 1,200 inherited conditions — are only available through a health care provider; however, as time goes by, more and more of them are being offered directly to consumers.

Such direct availability brings up another caveat: GINA won't protect you from making inappropriate decisions, either when choosing which of the more than 600 U.S. genetic-testing laboratories to use, or when trying to interpret your own test results.

The upshot of all this is that without appropriate counseling, people may not understand the implications of the results and use them to make poor health decisions. While some of these tests give accurate results and are based on solid science, others are complete rubbish or frauds.

For example, some genetic testing companies now use test results to recommend dietary changes for their clients or urge them to purchase the company's own specially formulated products aimed at "individual needs."

Here is some advice from specialists when considering a gene test:

  • Know that genetic tests are of no personal value unless you can use their results to modify your health behaviors.
  • Consult a doctor or genetic counselor to weigh the pros and cons of getting such a test.
  • Ask whether the test is accurate and whether, if you find out you have a dangerous gene, that information will just cause you worry more or whether it will make it possible for you to take proper steps to decrease your risk.
  • Find out what the results will mean for your siblings and children. How big are the risks of your family members — and do they really want to know?

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