Ways to prepare for genetic testing
A Youngtimers Guide ・ Last Reviewed July 2, 2025There are many things you can do to prepare for genetic testing.
Brush up on privacy precautions.
Many people worry about discrimination based on their genetic test results, and rightly so. With the advent of digital patient records, people should make every effort to protect their and their families’ privacy.
Some members of the Youngtimers community take privacy measures that include:
Asking clinicians to keep genetic information outside of electronic medical records and in paper files instead.
Undergoing genetic testing under a pseudonym (a false or fictitious name).
Avoiding the use of health insurance for genetic testing or other FAD-related expenses.
Paying for genetic testing (or FAD-related expenses) using cash or a cashier’s checks.
Creating an anonymous email account for all FAD-related activities, such as online forums or events
Proactively address long-term financial risks.
In 2008, the US Congress enacted the Genetic Information Nondiscrimination Act (GINA), to protect people against discrimination by their health insurance provider or employer. But the act does not apply to long-term care, disability, or life insurance providers. Learn more about GINA. ⧉
Before genetic testing, consider whether long-term care or life insurance policies make sense for you. If they do, then it is important to have these in place before contacting a genetic counselor.
Consider your support system.
The genetic testing process requires that you bring a support person along, so you should consider who this person will be. Counselors recommend it be someone who is not at risk of inheriting an FAD mutation.
Getting tested can be an emotional rollercoaster. In addition to having a support person for your appointments, it can be helpful to identify 1-2 additional people you can talk to about this process.
It is important to consider that genetic testing results can have a heavy impact on both a person and their partner. Partners are sometimes less prepared for the impact of learning a loved ones’ genetic testing result.
If your partner is your support person, the counselor can help prepare them for the result as well. While supporting you, they’ll need their own support system too.
Who should you tell about genetic testing?
Some community members who have undergone testing recommend telling close friends and/or family that you’re undergoing the process, but doing so without giving away specific dates of appointments. That way, you don’t feel pressure to respond to calls or texts immediately. This gives you an opportunity to process test results on your own before reaching out to others.
Every family’s dynamics are different, and some people choose not to tell their families that they are undergoing genetic testing. Consider the beliefs, opinions, and personalities of your family members to decide who to tell, and when.
Prepare for the cost.
Cost may depend on how you plan to pay for the test, and whether there is a known mutation in your family.
If there is NOT a known variant in your family, you’ll likely have a panel test, which covers everything.
If there IS a known variant in your family, you need a targeted genetic test to check for that mutation. This can be less expensive. There is usually no difference between saliva and blood tests.
How people pay for genetic testing
Research. If you are participating in research, genetic testing costs may be covered by your trial or study.
Health Insurance. Your health insurance may cover some or all of the cost. For those who use health insurance to pay, the price depends entirely on the specific carrier and policy, and the type of test. Some people might have $0 out of pocket cost for testing, while others may pay more than $1000 for a panel.
Using health insurance to pay for genetic testing comes with some downsides. Some people are concerned about the risk of genetic discrimination, and they avoid using health insurance because they want to keep this information out of their medical files. Additionally, insurance pre-approvals are sometimes required, and securing a pre-approval can add hassle and slow the process down.
Self Pay. Many people choose to pay for genetic testing out of pocket. As of July 2025,
If there is NOT a known variant in your family, you’ll likely have a panel test. In June 2025, Genetic Counselor Meagan Cochran reported that the least expensive self-pay option for a panel is GeneDx at $500.
If there IS a known variant in your family, the test will check for that specific mutation. As of June 2025, GeneDx offers a “single known familial variant” at a self-pay rate of $99.
You don’t have to have payment figured out upfront. Your genetic counselor will be able to consult with you on the best way to pay and the cost options when and where you decide to test.
Get a copy of your family member’s test report.
Genetic counselors will often ask for your parent or family member’s genetic testing report, which lists the specific variation (“mutation”) they carry, as well as their accession or testing ID number. Having this information on hand can simplify genetic testing, because it tells geneticists exactly where to look.
If you don’t have a parent or family member’s genetic information, the genetic counselor or doctor will order an FAD panel. This means testing the entire sequence of all three genes’ (PSEN1, PSEN2, and APP). Panel testing can be 2-3 times more expensive than targeted testing of a specific gene and mutation.
If possible, it’s ideal to be tested at the same lab that found your relative’s genetic mutation.