Direct-to-Consumer Genetic Testing & Children

By: Vera Shively and the Genetic Counseling Team at Lurie Children’s

With the growing popularity of services like Ancestry.com and 23andMe, the Genetic Counseling team explains what to consider when looking for a service and what these results could really mean for you and your family.

What Is Direct-to-Consumer Genetic Testing (DTC-GT)?

Aside from a stroll to the mailbox, DTC-GT can be done in your home. A healthcare provider is usually not part of the process. Tests are sold directly to consumers. Customers receive kits in the mail with instructions for collecting and returning their DNA samples. The results are then available through an internet link. It sounds simple enough, and it’s getting cheaper all the time. Special holiday offers will likely appear soon for DNA testing that covers ancestry, traits, disease risk and more.

Wouldn’t it be fun to have the whole family tested, even the kids? While most DTC-GT is not marketed to children, a popular company posts instructions explaining how a parent can submit a child’s sample. Some tests for children currently on the market include testing for academic aptitude or athletic talent.

Before getting swept up in the holiday DTC-GT promotions, it’s important to consider all the pros and cons of testing. 

What Should You Be Concerned About?

Some of the concerns include limitations and accuracy of test results, informed consent, and privacy. These apply to anyone considering DTC-GT, but especially if considering testing a child.

• Results from DTC-GT vary widely. This testing is not regulated in the same way as a genetic test ordered by a healthcare provider. DTC-GT results are not diagnostic. This means the tests are not designed to confirm if a certain disease is present and cannot be used to make any treatment or medical management decisions. Interpreting and understanding test results can be confusing, and testing can sometimes reveal unexpected or unwanted information.  Science does not support claims that testing can inform us about certain traits, such as a child’s ability to be a good athlete or student.

• Informed consent means that a person understands all of the information they need to know about the benefits and risks of a procedure or test, and they agree to go ahead without outside influences. Informed consent should be part of the DTC-GT process. Most children lack the decision-making capacity to decide for themselves if they want testing, and parents should carefully think about the possible risks and benefits of testing a child who is not old enough to consent. Since DTC-GT results are not likely to guide a child’s medical care and there can be a chance for harm, genetics professionals generally recommend letting a child decide for themselves when they are an adult.

• Privacy is also important to consider. In the case of DTC-GT, privacy of a person’s genetic information cannot be guaranteed now or in the future. This impacts the child today and in the future as an adult. Testing also affects the privacy of biological family members (“blood relatives”), because being related means having a lot of genetic information that is the same.

What About Genetic Testing at Lurie Children’s?

At Lurie Children’s, genetic testing is ordered because a child’s health problems are thought to have a genetic cause. A healthcare team of doctors, advanced practice providers, and genetic counselors meet with families to discuss benefits and limitations of recommended testing, including issues of informed consent and privacy. The healthcare providers explain what the results mean, answer your questions, and provide resources. Importantly, they provide guidance on what steps should be taken next to provide the best care for your child.  Learn more about the Division of Genetics, Birth Defects and Metabolism at luriechildrens.org/genetics.

Additional resources on DTC-GT

• http://aboutgeneticcounselors.com/Genetic-Testing/What-is-At-Home-Genetic-Testing
• https://www.genome.gov/27570940/april-20-directtoconsumer-genomic-testing/
• https://ghr.nlm.nih.gov/primer/dtcgenetictesting/directtoconsumer