Genetic Test Results

Saturday, December 19, 2009
Getting Genetic Test Results


“I advise women to share their genetic test results with every blood relative in their family! Although I have heard some convincing reasons why someone would not share results (particularly if the relative doesn't want to know) I encourage people who test positive to let family members know—this includes 2nd and 3rd degree relatives. Many genetic counselors provide patients with a letter that they can send to relatives if they don't have a particularly close relationship or don't feel comfortable sharing the information by phone or in person. I like the idea of involving the genetic counselor because then the family member knows where to go for more information. I also encourage women to share their test results with their health care providers. It's important information for your health care provider to have. In my case I chose to share my test results with my entire health care team.”

Sue Friedman

How long does it take to get the results?


Commercial labs often give faster results (usually within 4 weeks) than research centers (a minimum of 4 weeks, often longer).

How will you get your results?

Typically, results are sent to your doctor or genetic counselor, who reports them to you. A critical part of genetic risk assessment is the responsible and sensitive disclosure of test results. Be sure to ask your doctor or genetic counselor when, how, and where you will find out the results.

You may wish to bring someone along when you get your results. If you are told you have a genetic mutation, having someone who cares about you at your side can be very reassuring. Because a great deal of information is discussed, it may also be helpful to have another person to listen and help remember what was said.

Of course, genetic information can affect the whole family. You might be going through this process with your family involved, in which case they may join you when you get the results. Or you may be the only one in your family who can get this information or who wants it. In fact, some family members may have strong feelings against genetic testing. And sometimes, they may ask you to keep the results secret from them and the rest of the world. But keeping a secret doesn't mean you should pursue this process alone and without support. This is one reason why having a genetic counselor to help you through it is so important.

If you’re concerned about privacy

You may decide to share your test results with your family members or doctors. This is a personal decision.

Even though there are laws in place to protect against genetic discrimination, you still might want to keep your results confidential. You can request that test results NOT be written on any chart or noted in any record.

If it turns out that you do have a genetic abnormality, you can protect your privacy by removing your name from the test results before providing your relatives with a copy.



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