Know Before You Go

Find your own best route to testing
There is no one path that leads to genetic testing. You can start the conversation with a trusted healthcare provider or you can decide to work with a genetic counselor. You can even choose to work directly with a lab yourself. But, no matter how you arrive at your decision, there are some practical matters to think about upfront.

What you can expect
Regardless of the path you take, you can expect certain elements to remain consistent across the board. The following steps are considered to be standard:

Gathering your family history – if you are able – plays a huge part in your decision to undergo genetic testing. Filling in the blanks – which relatives had cancer? what type? how old were they when they were diagnosed? – helps you get a better idea about your risk and can even point you toward specific tests.

The route to testing can start with your healthcare provider or a genetic counselor. From helping get your head around the process to explaining payment and insurance, they’re an invaluable resource.

The actual genetic test uses DNA, extracted from either a blood or saliva sample. You can work with your healthcare provider or genetic counselor to collect the DNA sample. Sometimes, the lab will send you a kit to have you provide your own sample.

Depending on the lab and the test, you’ll get your results in around 2-6 weeks. Make sure you understand how the lab delivers the results. Will they send the results directly to you, or to your healthcare provider or genetic counselor? Either way, plan on talking to one of them about your results.

Once you get your results, you and your healthcare provider should work together to develop your personalized risk management plan (learn more about this at BrightPink.org).

Another Way to Go

Some women will choose to go with a genetic testing lab that works directly with patients, rather than coordinate the test through their own healthcare provider or a genetic counselor. Starting the process on your own is always an option but, for women with no significant family history who are mainly getting tested out of curiosity, it’s an especially good option. Start-at- home tests usually work like this:

  • You can work with the lab’s network of healthcare providers, rather than with your own. But, if you prefer to work with your own healthcare provider, the lab can work directly with your healthcare provider to order the test too.
  • Your testing kit comes in the mail. You collect your DNA sample – this will be either saliva collection or a swab from the inside of your cheek – and mail it back. (Some labs do require you to have blood drawn at a health clinic.)
  • The lab contacts you about your results. Most start-at- home labs also post your results securely online or send via mail.
  • Depending on the lab, you may be able to talk about your results with one of the lab’s own genetic counselors.
UNDERSTANDING TEST OPTIONS

Practical Considerations

Your genetic test results will probably be added to your medical record, especially if your healthcare provider ordered the test.

The Genetics Information Nondiscrimination Act (GINA) makes it illegal for a health insurance company to deny you coverage or change your premium based on your test results.

But, if you’re in the U.S. military or get health benefits through the Veterans Health Administration or Indian Health Service, GINA doesn’t cover you

Yes. An employer can’t use genetic information to make employment decisions. GINA also makes it unlawful for employers to request, require or buy your genetic information. There are, however, a handful of extremely specific exceptions, including an exception for information a company learns pursuant to the Family Medical Leave Act.

If you already have a life insurance policy, you don’t have to share your results with your insurer.

If life insurance is still on your to-do list, getting a policy before you undergo genetic testing can be a good idea. GINA doesn’t protect you when it comes to getting life, disability or long-term care insurance. Companies selling those policies can legally ask about your health, your family history and your genetic information. And they’re free to reject you based solely on your genetic risk.

“Before getting genetic testing, I would have loved to have known the long term implications like qualifying for life insurance. It’s one of those things that I wish my doctor had thought of, because there was no going back at that point. Fortunately, I had a small life insurance policy when I was a child that has carried over. But I can’t open a new life insurance policy now. I wish somebody had given me that information.”

- MICHELLE