- At-home or direct-to-consumer (DTC) tests may include some screening for health conditions, but they are typically more limited than clinical testing ordered by doctors and genetic counselors in a professional setting.
- Test results may not include all the information you were hoping to find; you may be surprised by unexpected information or disappointed by a lack of it.
- When you use an at-home test, the lab has access to your DNA which introduces different privacy issues (how your data is protected, how can it be used by the company) compared to at a hospital.
- If you have results from an at-home test which concern you, it is recommended that you see a genetic counselor.
You may have seen advertisements for genetic test kits that you can buy at a drugstore, online, or over the phone.
These are the tests where they mail a kit to your home and you either swab your cheek or spit into a tube. Then, you mail the kit back to the lab where it may be tested for a variety of things, including:
- Traits ( e.g., hair loss or dimples)
- Wellness (e.g., risk of certain types of cancer or restless leg syndrome)
- Ancestry reports (i.e., ethnicity and lineage)
- Carrier status (e.g., Tay-Sachs Disease or Sickle Cell Anemia)
- Paternity testing (i.e., determining a child’s biological father)
These are called at-home or direct-to-consumer (DTC) tests. They don’t need an order from a doctor and don't follow the same guidelines as tests ordered through a doctor or genetic counselor.
Considerations Before Taking an At-Home Genetic Test
Before you order at-home genetic testing, it's important to consider your goals for testing. It's also a good idea to understand what a test may or may not tell you, how reliable the testing is, and whether you will receive any guidance to help you understand what the test results mean for you and your family. If you're thinking about at-home genetic testing, consider the following.
Is the company trustworthy?
If you decide to order an online test, research the company providing the service. Verify that:
- The lab that conducts the tests has received one of the following certifications: Clinical Laboratory Improvement Amendments (CLIA), College of American Pathologists (CAP) or Association for the Advancement of Blood & Biotherapies (AABB). The Food and Drug Administration (FDA) is still exploring how it will address genetic testing and has approved some but not all such tests.
- The company’s staff members have received extensive education in the subject, such as being certified genetic counselors, medical geneticists, pathologists, Ph.D. geneticists, biologists or molecular pathologists.
What will the test tell you, exactly?
It's important to fully understand the test results. You should determine:
- Exactly what is being tested (health conditions, ancestry, traits, carrier status)
- How the results will be provided
- What you will do with your results, and if they will help you make health decisions
- If you might find out information you might not be expecting
- If you plan to share your results with your family
- If the company will contact you if there are new scientific findings that may change your results
Will your personal information be protected?
Carefully review the testing company's privacy and security policy. Be sure to find out:
- What does the company plan to do with your genetic information, now and in the future?
- Will the company share your genetic information with pharmaceutical or biotechnology companies, researchers, not-for-profit groups or public or private DNA databases?
- Will the company let you know if its policies change, or if your information is shared?
What professional help will the company provide?
No matter the results of your test, you likely will have questions. You should find out how the company plans to answer your questions.
- Is a genetic counselor or other trained professional available before or after testing to provide guidance and help?
- If so, is this service included in the cost of testing, or is there an extra charge?
- Is the professional employed by the company, or is the service separate?
- If the company does not have trained genetic professionals on staff, can it refer you to someone?
Receiving the results may produce a variety of emotions. You may be surprised, relieved, disappointed or confused. Whether you choose at-home testing or seek out testing through a medical professional, seeing a genetic counselor can provide helpful guidance.
At-Home Genetic Testing Resources
For additional resources related to at-home genetic testing, visit the Resources to Help You section of the site and use the "At-Home Testing" filter.