How do I choose a direct-to-consumer genetic testing company?

If you are interested in direct-to-consumer genetic testing, do some research into the companies that offer these services. Questions that can help you assess the quality and credibility of a testing company include:

• Does the company’s website appear professional? Do they have an app? Are both secure? Does the company provide adequate information about the services it offers, including sample reports, pricing, and methodology?

• Does the company have experienced genetics professionals, such as medical geneticists and genetic counselors, on its staff? Does the company offer consultation with a genetics professional if you have questions about your test results?

• Does the company explain which genetic variations it is testing for? Does it include the scientific evidence linking those variations with a particular disease or trait? Are the limitations of the test and the interpretation of results made clear?

• What kind of laboratory does the genetic testing, and is the laboratory inside or outside the United States? Is the laboratory certified or accredited? For example, does the laboratory meet U.S. federal regulatory standards called the Clinical Laboratory Improvement Amendments (CLIA)? Is the test approved by the U.S. Food and Drug Administration (FDA)?

• Does the company indicate how it will protect your privacy and keep your genetic data safe? Does that information include both current privacy practices and what may happen to your genetic data in the future?

• Does the company indicate who will have access to your data and how it may be shared? Does it share or sell their customers’ genetic data for research or other purposes? For some companies, much of their profit comes from selling large amounts of participant data for research and drug development, not from selling individual test kits.

Be sure to read and understand the “fine print” on the company’s website before purchasing a direct-to-consumer genetic test. This detailed information, which is often called the “terms of use” or “terms of service,” is a legally binding agreement between you and the company providing the testing. It spells out what is included and excluded in the service and details your rights and the company’s responsibilities. If you still have questions, contact the company to get more information before you make a decision about testing.