In the past, if you wanted to learn more about your ancestry or your health history, you had to talk to your parents or grandparents. But these days, genetic testing makes it easy to get much more detailed answers.
Many people are using at home direct-to-consumer (DTC) genetic testing, like those from AncestryDNA, MyHeritage DNA and FamilyTreeDNA, to find out what countries their ancestors came from and what health traits might be hiding in their DNA.
But before you spit in a tube or wipe your cheek and send off your sample, it is important to understand what these tests can and can’t do.
What is direct-to-consumer genetic testing?
"These are genetic tests that are sold straight to people who want to learn more about their ancestry, traits or genetic risks without involving their health care provider," said Esteban Astiazaran Symonds, MD, a medical genetics specialist with Banner - University Medicine.
The process is simple. You buy a test kit online, follow the directions to collect a saliva sample or a cheek swab and mail your sample to a laboratory. The lab analyzes the sample and sends the results directly to you, usually online.
These genetic tests analyze your DNA to provide information about your genetic makeup, like:
- Your ancestry and ethnic background
- Possible health risks like mutations linked to breast cancer, Alzheimer’s disease or heart health
- Physical traits like eye color or specific taste preferences
- Whether you carry certain genes that could be passed to your children
What are the pros of direct-to-consumer genetic testing?
There are several reasons why you might choose to take DTC genetic tests:
- They are convenient and easy to access: These tests are simple to order and use. You do not need to visit a health care provider’s office or a lab. You collect your DNA sample from your home.
- You can get insights into your family heritage: You may want to discover where your ancestors came from and explore your genetic roots. You might connect with unknown family members.
- They offer health and trait reports: Some DTC tests report your risk for conditions like breast cancer or Parkinson’s. They may also provide insights into traits like lactose intolerance, your sleep habits or how your body responds to caffeine or exercise.
- They may motivate you to take action: Learning about your genes might encourage you to talk with your health care provider, make healthier lifestyle choices or get recommended screenings.
What are the cons of direct-to-consumer genetic testing?
While there are many benefits, it is also important to be aware of the drawbacks. "These tests carry risks and limitations, which have been emphasized by organizations like the American Medical Association, the American Heart Association and the American College of Medical Genetics and Genomics," Dr. Symonds said.
Be aware that:
- They may not be medically accurate or interpreted correctly: They often are able to detect only a small number of changes in a small number of genes and might miss important risk factors that clinical tests would find. They might also provide information you can’t act on, or information that is not proven to impact your health. “Many tests are not helpful, since there is not enough evidence to suggest that a positive or negative result would make a difference in someone’s health," Dr. Symonds said.
- They may give incorrect results: You could get false positives or false negatives. "Clinical laboratories used by health care providers follow strict regulations to make sure the tests are useful and the results are valid and accurate. These same standards are not always followed by DTC companies," Dr. Symonds said.
- They may include little or no genetic counseling: Without genetic counseling, you may not understand the limits of genetic testing and whether a specific test is useful or appropriate.
- You may misunderstand the results: It is easy to misinterpret what your test results mean. "Our genetics are incredibly complex, and genetic test results are very hard to interpret. They require careful review by trained professionals," Dr. Symonds said. Misunderstanding could lead to worry about a condition you might never develop or a false sense of security when you are still at risk.
- Emotional impact: You might get unexpected findings like discovering unknown relatives or learning about health risks you were not aware of. These results can be emotionally hard to process.
- Privacy and data concerns: When you share your DNA, you are also sharing highly personal information. The Health Information Portability and Accountability Act (HIPAA) regulations that protect people’s identifiable health information do not apply to DTC companies. “This raises major concerns for privacy, data sharing and potential discrimination based on genetic test results," Dr. Symonds said. It is important to read the company’s privacy policy to understand how your data may be used.
When should you talk to your health care provider or a genetic counselor?
"I would encourage anyone interested in learning more about DTC or clinical genetic testing to talk to their provider before testing to discuss any risks and benefits," Dr. Symonds said. If your provider can’t answer detailed questions, you can ask for a referral to a medical geneticist or genetic counselor.
If you’ve already taken a DTC test and it shows a possible health concern, try not to panic and don’t make any medical decisions right away. Talk to your health care provider or a genetic counselor.
They can help you:
- Understand your actual risk
- Decide if more comprehensive testing is needed
- Create a personalized plan for prevention or care
You should also talk to a professional if you are concerned about inherited conditions or if you have a strong family history of serious health conditions, like certain cancers. In these situations, clinical genetic testing may be a better option.
What is the difference between direct-to-consumer and clinical genetic testing?
It can help to understand key differences between these two types of testing.
DTC tests
These are designed to give you general insights and may be a starting point for exploring your health or ancestry. They are not intended to guide your medical care directly and limitations may not be clearly explained. They are not a substitute for clinical genetic testing.
They may not be less expensive than clinical tests. "Many people choose DTC testing companies because they assume clinical genetic testing is extremely expensive. But the costs of clinical genetic testing have decreased over the last decade. And, in many cases, genetic testing can be covered by health insurance," Dr. Symonds said.
Clinical genetic testing
Health care providers order the appropriate test to determine your risk of a condition passed down through genes. Benefits and limitations of the test are clearly explained in pretest counseling. Testing is usually done at a health care provider’s office or laboratory.
Clinical tests may examine more genes and come with interpretation from trained professionals. Clinical testing may be a better choice for you if you have a strong family history or specific concerns about inherited conditions.
Is direct-to-consumer genetic testing right for you?
If you are curious about your ancestry or want a general overview of your health, an at-home test may offer some helpful insights. Just remember:
- These tests have limits
- They do not replace professional medical advice
- You should always talk to your health care provider or a genetic counselor if you have questions or concerns about your results
Why choose Banner Health for genetic counseling?
At Banner Health, our genetic counselors can help you make sense of your DNA whether you are following up on results from a direct-to-consumer test or considering clinical testing. They can help you understand your results so you can make informed decisions about your health and your family’s future.
If you have concerns about inherited conditions or a family history of serious health issues, talk to an expert at Banner Health.
Other useful articles
- How to Manage Your Own Risk When There Is Cancer in Your Family
- Inherited Epilepsy Is Rarer Than You Think
- Why Your Family’s Medical History Matters for Your Health
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