What is Direct-to-Consumer Genetic Testing?
Direct-to-consumer (DTC) genetic testing refers to genetic tests that are sold or marketed directly to the consumer over the internet (online), or less commonly, in print or television advertisements. Currently, there is a wide range of types of genetic testing offered over the internet.
These types of testing include medical (clinical) genetic testing, such as carrier testing and predisposition testing; ancestry testing; DNA-based identity testing; and informational testing, such as SNP testing and whole genome scanning.
- The validity, reliability, as well as the consequences and implications of these genetic tests vary greatly. This has created controversy over if DTC genetic testing should even be made available.
Many genetic professional communities have issued statements and policies regarding DTC genetic testing, including the American College of Medical Genetics and American Society of Human Genetics, as well as the National Society of Genetic Counselors.
How is Testing Performed?
- A test kit is mailed directly to the consumer's home.
- This kit involves instructions for collecting a DNA sample, often by swabbing the inside of the cheek or spitting into a plastic tube. In some cases, the person must visit a clinic to have their blood drawn.
- This DNA sample is then mailed back to the laboratory.
- Consumers are notified of their results by mail, email, over the telephone, or the results are posted on the provider's website, which can be obtained with a private username and password.
Some DTC providers employ genetic counselors that are available pre-testing to explain the benefits and limitations of testing, as well as post-testing to explain the results and answer questions. Others do not.
Some DTC providers employ physicians to facilitate testing or require that the consumer obtain physician authorization themselves. Others do not require any physician involvement.
Testing Considerations
Ancestry testing and DNA-based identity testing are unique types of genetic testing with their own special considerations.
Here are some considerations that may be useful when considering DTC genetic testing for clinical or informational purposes:
- Does the provider have a physician(s) on staff (or require physician authorization) to facilitate testing and ensure the quality of the provided services?
- Does the provider make exaggerated claims about the benefits of genetic testing?
- Does the provider clearly disclose company information, the accuracy and reliability of all their genetic tests as well as the scientific evidence their tests are based on?
- Does the provider use only accredited laboratories? The accreditation process ensures that laboratories adhere to strict standards and guidelines.
- Does the provider address privacy concerns?
- Does the provider include comprehensive and easy to understand reports for you and your doctor as part of their service?
- Does the provider utilize and value the process of informed consent before ordering testing?
- Does the provider provide comprehensive and easy to understand information on their website about the benefits and limitations of genetic testing, the process of testing, the pros and cons of testing, genetic basics, genetic issues, and genetic conditions?
- Does the provider give discounts to people who are ordering more than one test or panels of testing?
- Does the provider charge shipping fees, test kit fees, membership fees, or any hidden fees?
- What type(s) of genetic testing does the provider perform?
Testing Providers
DTC testing providers have different standards, policies and accreditations, which should always be reviewed before ordering testing. More information about individual DTC providers can be found by searching by provider name or by a genetic test they offer.