Some people are interested in at-home or Direct-to-Consumer (DTC) genetic testing. Although these tests offer convenience, affordability, personal choice, and privacy, there are other things to consider. In general, most genetic tests are accurate when performed by reputable companies. However, the interpretation or meaning of test results can differ depending on who reports the results. Also, DTC genetic testing does not always provide useful information to help you make decisions about your health. You should always talk with your doctor or a genetic expert before and after any genetic test. Click the links to learn more.
- What is DTC genetic testing?
- What should I know about DTC genetic testing?
- What should I do if I am interested in genetic testing?
What is DTC genetic testing?
In the past, genetic testing meant going to your doctor. They would order the test and give you the results. Now, you can buy genetic testing over the Internet or phone. In fact, some companies advertise genetic testing services in magazines, on the radio, and on TV. These products are known as Direct-to-Consumer or DTC genetic testing.
What do companies test for?
There are many different DTC genetic tests available. Companies may advertise DTC genetic tests for health concerns, ancestry, or even relationship compatibility.
How is DTC genetic testing done?
When you order a DTC genetic test, the company sends you a kit with instructions on how to collect a sample of DNA from your spit or by swabbing your cheek cells. You send your sample back to them through the mail. They may perform the test at their lab, or send your sample to a separate lab. Most labs give you access to a website to view your results.
What should I know about DTC genetic testing?
While some DTC tests have proven value, others make false claims that are not supported by scientific evidence. They may not provide useful information to help you make decisions about your health. There are some things you should think about before pursuing DTC genetic testing.
Privacy
- Your test results are kept confidential on the company's website. However, you should consider what will happen if the company has problems with their website, or goes out of business.
- The federal Genetic Information Nondiscrimination Act (GINA) says that health insurers and employers cannot use genetic information to make decisions about employment or insurance coverage. To learn more about GINA, click here. To review the full law: https://www.eeoc.gov/laws/statutes/gina.cfm.
Accuracy
- DTC genetic testing companies use different methods and report on different genetic changes. You could send your DNA to three different labs and get back three different results. One lab may say your results place you at high risk for a health issue, while a different lab interprets the same results as normal risk.
- Not all companies offer access to a genetic counselor to help you understand the testing or results. It is easy to misinterpret or be confused about the results and possible health impacts. You may experience:
- False reassurance: Your results may show that you are not at risk, when you may actually be at risk for disease.
- Unnecessary anxiety and stress: Your results may show that you are at risk, when you are not.
- Without accurate information you may:
- Pursue unnecessary medical services or unproven therapies
- Go without needed treatment
- Manage medication without the help of your doctor
Personal readiness
- Results from DTC genetic testing can be unexpected and overwhelming. They may have major health impacts for you and your family. Your doctor or a genetic expert can help you understand the testing process and results.
Company motivation
- Some companies falsely advertise the benefit of their test in order to sell additional products. For example a company may tell you that your results show you have a vitamin deficiency. Then, they may ask you to buy vitamin supplements from them.
What should I do if I am interested in genetic testing?
Talk to an expert.
Experts such as genetic counselors and doctors trained in genetics can provide you with information about genetic tests. They can explain the risks, benefits, and limitations. They can also help you understand how the information can help you and your family. Genetic experts can accurately interpret results. To find locations for Regional Genetics Clinics, click here.
Do not make important health decisions based on DTC genetic testing without talking to your doctor or a genetics expert.
Genetics and lifestyle can both affect your health. Your doctor or genetics expert can give you advice about how best to reduce your risk of disease.
Carefully research any DTC genetic testing company.
Read the information on the company's website carefully. Don't be afraid to contact them with any questions. Ask if genetic counseling is included in the cost of testing, and if the lab meets quality standards. The lab should be CLIA (Clinical Laboratory Improvement Amendments) certified. To learn what makes a lab CLIA-certified, click here.
For more information about DTC genetic testing
American College of Medical Genetics (PDF) (ACMG)
American Society of Human Genetics (ASHG)
National Society of Genetic Counselors (NSGC)