Getting Test Results

Expert Quote

“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

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How long does it take to get the results?

Typically, results are sent to your doctor or genetic counselor, who reports them to you. 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?

A critical part of genetic risk assessment is the responsible and sensitive disclosure of test results to you. 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 an abnormal gene, having someone who cares about you at your side can be very reassuring. Because a lot of information is discussed, it may also be helpful to have another person to listen and 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 without support. This is one reason why having a genetic counselor to go through it with you is so important.

Caution in disclosing results

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

But because laws protecting your privacy don't exist everywhere—and those that do are still fairly new—request that test results NOT be written on any chart or noted in any record.

If you have a genetic abnormality, other family members will need the information regarding the specific mutation identified so that they can be tested to learn if they also have it. To protect your privacy, remove your name from the test result before providing your relatives with a copy.