Before you have genetic testing:
- Meet with a certified genetic counselor. Many health care providers offer ‘genetic counseling’ but are not graduate trained in Genetics, board eligible, or board certified in this area. Make sure you’re seeing the real deal. If there is no genetic counselor in your area or the wait time is too long, consider independent phone or webcam counseling. Several companies offer such counseling, and it is often covered by insurance. You can find an in-person or telephone/webcam genetic counselor through the National Society of Genetic Counselors.
What to ask a genetic counselor:
- Ask about the risks as well as the benefits of genetic testing so that you can make an informed decision about whether you really need and want testing as well as whether now is the right time.
- Ask for help with your insurance pre-authorization. You’ll be more likely to get coverage and to pay little or nothing out of pocket when appropriate pre-authorization is performed.
- Ask which genetic test would be the best match for you. Your genetic counselor is more likely to know which tests should be considered in your case. There are many tests, and no, they are not all the same. Also, more genes is not necessarily better or the right answer for everyone.
- Ask if the testing laboratory being used shares their data in public databases, which aids research in this area. If not, consider using a laboratory that does not hoard data for private profit.
After you have genetic testing:
- Be sure that you review your test result with a certified genetic counselor for accurate interpretation and next-steps. This is critical even if no genetic diagnosis is made. For instance, depending on your family history, increased cancer screening may still be appropriate after negative or inconclusive genetic testing.
- Ask for accurate patient resources such as websites, books, movies, and advocate groups. You can also find these groups via a google search and via social media platforms such as Facebook and Twitter. However, remember that not all information on the web is accurate/up to date. Your genetic counselor can help you sort through this.
Photo by Duncan Hall, via Flickr