Direct-To-Consumer Genetic Testing

– What You Need To Know –

April 10, 2017

One of the hottest stories in the news right now is the FDA’s recent decision to allow direct-to-consumer (DTC) genetic testing company, 23andMe, to market and offer genetic testing for genetic predispositions towards ten common conditions, like Alzheimer’s disease and celiac disease. One question you may immediately find yourself asking is:

“Why does this matter?”

Simply put, the FDA’s decision is monumental because it points to a growing acceptance of allowing patients to explore their DNA without the guidance of a healthcare professional like a doctor, nurse, or genetic counselor. DTC tests, unlike clinical tests, are available from the comfort of your own home. All patients have a right to make an independent decision to pursue this type of testing and the FDA’s groundbreaking decision emphasizes that point.

 

Before you decide to undergo the 23andMe test or any other direct-to-consumer test, consider a few things:

1)    Genes are not fate. Our health is influenced by a combination of genes and the environment. Just because you test positive for predispositions to disease does not mean you will ever, actually, develop the disease. Similarly, a negative result does not mean there is no risk. Though we know a lot about how genetics impacts our risk of disease, there is still much we do not yet understand.

2)    Results could be upsetting or startling. Before typing in that credit card information, read through the explanations of possible health conditions you could learn about and make sure you are comfortable with the possibility of discovering an increased risk of a condition. Think about what you might do with that information – would you feel empowered or anxious?

3)    Surprises happen. Some ancestry tests, for instance, allow you to import your genetic data into genealogy tools and help you find distant relatives. Occasionally, though, these tests may discover something surprising like a half-sibling you didn’t know about, for instance. There are also cases of adopted individuals accidentally discovering a biological parent. Though rare, consider surprises and how you might react – would you be excited by surprise information or upset?

4)    Genetic counseling can help you understand your results. Most DTC genetic testing companies will give you results but won’t give you a customized risk assessment. Genetic counseling after receiving DTC results can help you to understand where your risk falls on the spectrum and what steps you and your family can take to reduce the risk. In some circumstances, additional genetic testing through a doctor or genetic counselor may be needed to further clarify your risk.

5)    Your results can impact your relatives. If you carry a risk for disease, for instance, your children, siblings, parents, and other relatives may also be at risk. Start a discussion with your family and see what types of genetic information your relatives do and do not wish to know.

6)    Your DNA is private until it isn’t. DTC tests may not be forthcoming on who has access to your genetic data. Some companies go to great lengths to keep your genetic data secure. Others may make your data anonymous and sell it to third parties. Some companies allow you to opt-out of sharing while others require an opt-in and others have no clear option at all. If you are concerned about the privacy of your data, do your research before mailing in a DTC test and pay attention to the fine print.

7)    DTC tests are generally not covered by insurance. Medical grade genetic tests, on the other hand, often are covered by insurance if certain criteria are met. If there is a specific medical question you are trying to answer using genetic testing, consider meeting with a genetic counselor before clicking the “buy” button to see if a DTC test is sufficient or whether a medical grade test is a better use of your time and money.

DTC tests are an exciting new way for patients to explore their DNA. If you have questions about a DTC test, do your research, contact the laboratory, or consider meeting with a genetic counselor to learn more.

 

About the author:

Anna Victorine, MS, CGC is a board-certified genetic counselor at Provenance Healthcare. She currently specializes in cancer genetics and personalized medicine and is happy to meet with patients to discuss DTC testing. Appointments with Anna can be made by calling 702-478-2524.