Direct-to-consumer genetic testing

The Federal Trade Commission has a Fact Sheet for Consumers that can help you think about direct-to-consumer genetic testing.

What Is Direct-to-Consumer Genetic Testing?

In the past, healthcare providers and genetic counselors ordered genetic tests for you. Today some companies sell genetic tests directly to you, so these tests are called “direct-to-consumer” genetic tests. You may hear or read about these tests:

  • On television
  • In a magazine
  • On the Internet

These direct-to-consumer genetic tests give you information about your DNA. You can get them without going to your doctor or telling your insurance company. Some direct-to-consumer genetic tests check for gene mutations that put you at a higher risk for particular conditions. For example, one test checks for mutations that put you at higher risk for diabetes. You also can buy tests that use a chip to check for many kinds of genetic changes at once.

A direct-to-consumer genetic testing company may give you results:

  1. By mail
  2. By telephone
  3. Online

Some companies have a genetic counselor or other healthcare provider who will explain your results to you and answer questions. Other companies do not provide this service.

Who Should Get Direct-to-Consumer Genetic Testing?

People buy direct-to-consumer genetic tests for many reasons. Some people want to find out their risk for getting a particular condition. Some people want to make healthy lifestyle changes based on their genes. Some people want to learn about their ancestry. Some people are just curious and want to know more about their genes. Whatever your reason, it is important to learn about the test and the company selling the test before buying it.

What Should I Know Before I Order a Test?

All U.S. genetic testing laboratories must follow certain rules. These rules are called The Clinical Laboratory Improvement Amendments (CLIA). 

But some companies that sell direct-to-consumer genetic tests are not CLIA-certified, so it is hard to know the quality of their tests. Before ordering a test there are several things to think about:

  • Some scientists, healthcare providers, and others have criticized direct-to-consumer genetic testing companies for making claims about their tests that are not proven. For many tests there is not enough information to know if the results are always right.
  • You may receive different results for the same test, depending on which company you choose.
  • The company can choose how much information it gives you and the type of information it gives you.
  • It can be helpful to talk to a healthcare provider about your questions and concerns before ordering a direct-to-consumer genetic test.

How Do I Understand My Results?

Genetic test results are hard to understand. Genetic testing gives you only one piece of information about your health and your risk for getting certain conditions. You have to think about your results along with:

  • Your family health history
  • The environment you live in
  • Your lifestyle
  • Health conditions you have
  • Medications you take

You need to think about all these things together to take action based on your genetic testing results. Talk to a healthcare professional about your results. You do not want to make important healthcare decisions based on incorrect, incomplete or misunderstood information. Some companies may provide a genetic counselor or other healthcare provider to discuss your results.  

How Do I Get Direct-to-Consumer Genetic Testing?

You can order the test yourself. You may see them for sale on-line, in a magazine or in stores.

What Is The Testing Process Like?

Usually the company sends you a kit to collect a DNA sample at home. If so, you wipe the inside of your cheek with a Q-tip. Then you mail the sample to a laboratory for testing. The company may have you visit a health clinic instead to have blood drawn.  

The price of direct-to-consumer testing may be several hundred or over a thousand dollars. This depends on the type and number of tests that are done and the services provided. For example, if the company offers a genetic counselor to help you understand your results, the test kit might be more expensive. Your insurance may cover some costs, but it is important to check with your insurance plan first to see if they will pay for all or part of the cost of the test.

Remember, a health professional should explain your test results before you make any healthcare decisions based on the information.